Today marks one year since I had the strictureplasties for my Crohn's, and I am happy to say that I am [still] doing brilliantly.
No pain, no niggles, no uncontrollable symptoms. Business is as usual as it can be for me (if you have Crohn's, your version of "normal" is completely different from that of a healthy person).
It's actually difficult for me to remember all the pain and suffering I went through last year when I was ill. And even though I was in hospital for nearly three months last summer, I barely remember any of it. It's amazing how the mind tends to forget the difficulties in life so we can move on and focus on the good things.
Since I've been feeling well, it's been my mission to make the most of the good days (or at least try!). I restarted running in November--and again in June after a break from April through May--and have tried my best to eat healthfully. I planned a wedding in three months, got hitched in April and then travelled to Australia (absolutely amazing place, by the way) for the honeymoon. In a sense, I feel like this year's life theme has been "go big, or go home," and I love it.
For those of us with Crohn's, this is a life-long disease, but with a bit of perseverance, we can win the battles, and enjoy our lives. Make the most of the good days, and you'll hardly remember the bad.
Showing posts with label Crohn's. Show all posts
Showing posts with label Crohn's. Show all posts
17 August 2012
02 February 2012
Name Change
It has been a hectic few months, and I cannot see things becoming any less so in the near future. I managed to make it back to America for Thanksgiving, did some travelling for work, celebrated Christmas and started wedding planning.
My health has been quite good, in fact, and I managed to regain all the weight I lost while ill and then some. I got up to 54 kilograms (approximately 119 pounds), which was a new high for me. I've trimmed a bit off in recent weeks, but I'm still at or above 50 kilograms.
In addition to successfully regaining my weight, I've also taken up running again. I spent nine weeks on the Couch to 5k program, which I found to be incredibly enjoyable. Even better were the Couch to 5k podcasts posted on the NHS website. The aim of Couch to 5k is to get people who do not run running for 30 minutes at a time in nine weeks. Weeks 1 through 6 have participants running for a few minutes with walking breaks between. So week 1 for example is one minute running, one minute walking eight times, and progresses to 90 seconds running, two minutes walking in week two and so on. It felt like quite an accomplishment to get to 30 minutes of non-stop running at the end. Unfortunately, I had a bit of a set-back a few weeks after completing the program consisting of knee and ankle pain. I figured this might have resulted from over-training, so I decided to pick up Couch to 5k from week 5, and go from there. Additionally, I received a heart rate monitor for my birthday, so I am using that to ensure I do not over-train. My pace has been almost painfully slow since using the heart rate monitor, but it does ensure that my workouts are not overly strenuous, and has been a good indicator of effort.
Besides trying to lead a healthier existence, my boyfriend and I have been busy planning for our wedding in April. A few things I've learned so far:
I had a few mini panic attacks after talking to friends who got married in the past few years, realising three months was not much time to get things done. But as I've managed to cross a few of the bigger things off my to-do list (venue, dress, etc.), I've calmed down considerably and find myself more relaxed. Don't get me wrong, we still have plenty to sort out, but we'll get there soon.
I've decided with the new year that a name change for my blog was in order. People mention on a regular basis that I'm sounding more British in terms of terminology and accent (mostly according to people who are not British), and I find myself moaning about everyday things as much as the locals. I've gotten used to rainy days, and dare I say this place is starting to feel a bit more like home. Of course, none of this changes the fact that I want to move back to California some day, but for now, I'm going to roll with the punches and see where this takes me.
My health has been quite good, in fact, and I managed to regain all the weight I lost while ill and then some. I got up to 54 kilograms (approximately 119 pounds), which was a new high for me. I've trimmed a bit off in recent weeks, but I'm still at or above 50 kilograms.
In addition to successfully regaining my weight, I've also taken up running again. I spent nine weeks on the Couch to 5k program, which I found to be incredibly enjoyable. Even better were the Couch to 5k podcasts posted on the NHS website. The aim of Couch to 5k is to get people who do not run running for 30 minutes at a time in nine weeks. Weeks 1 through 6 have participants running for a few minutes with walking breaks between. So week 1 for example is one minute running, one minute walking eight times, and progresses to 90 seconds running, two minutes walking in week two and so on. It felt like quite an accomplishment to get to 30 minutes of non-stop running at the end. Unfortunately, I had a bit of a set-back a few weeks after completing the program consisting of knee and ankle pain. I figured this might have resulted from over-training, so I decided to pick up Couch to 5k from week 5, and go from there. Additionally, I received a heart rate monitor for my birthday, so I am using that to ensure I do not over-train. My pace has been almost painfully slow since using the heart rate monitor, but it does ensure that my workouts are not overly strenuous, and has been a good indicator of effort.
Besides trying to lead a healthier existence, my boyfriend and I have been busy planning for our wedding in April. A few things I've learned so far:
- Weddings are expensive (though we realised this earlier)
- Three months is not much time to plan a wedding
- In an ideal world, you need more than three months to properly order a wedding dress
I had a few mini panic attacks after talking to friends who got married in the past few years, realising three months was not much time to get things done. But as I've managed to cross a few of the bigger things off my to-do list (venue, dress, etc.), I've calmed down considerably and find myself more relaxed. Don't get me wrong, we still have plenty to sort out, but we'll get there soon.
I've decided with the new year that a name change for my blog was in order. People mention on a regular basis that I'm sounding more British in terms of terminology and accent (mostly according to people who are not British), and I find myself moaning about everyday things as much as the locals. I've gotten used to rainy days, and dare I say this place is starting to feel a bit more like home. Of course, none of this changes the fact that I want to move back to California some day, but for now, I'm going to roll with the punches and see where this takes me.
12 September 2011
Oh What a Relief It Is
Things have been a bit busy in the past two weeks, hence the lack of updates.
I went back to work last Monday. By went back to work, I mean logged on from home as I don't think I'm technically allowed to carry the weight of my laptop plus power adapter for a total of eight weeks post-surgery. Luckily, I work for a company with flexible working practices, including the ability to work from home. This has been helpful not only from my recovery standpoint, but also when I was not feeling well enough to make the trek to the office, but not poorly enough to take a sick day.
The first week back went pretty well. I'll be honest, I was pretty useless the first few days. I was trying to regain my bearings--turns out a lot can change in three months--and refocus on some of the activities I was working on prior to being hospitalised. Whilst I'm now getting plenty of calories, which in theory should make it easier to concentrate, I've not had to concentrate much in the past three months. So the first few days were a bit challenging. Though I did find meetings easier to participate in than they were before I went to hospital because I'm no longer dealing with pain/discomfort.
By the end of the week, I had regained my bearings and met with several people who were able to steer me in the right direction in terms of the work I should be focusing on in the immediate term, and some things to think about for the mid- to long-term. While I'm still struggling to concentrate for a solid workday, I feel I'm doing better, and I think once I'm back to the office with fewer distractions, I will be functioning better than I was earlier this year.
I should point out that no one has forced, or even asked, me to return to work so soon (I'm only in week four of my recovery). I have no idea what I would have done to entertain, but not overexert myself for the six weeks after my dad went back to the States. I suppose I could have done a lot of baking, walking or knitting, but I was actually looking forward to using my brain a bit.
On Friday, I went to the surgery [doctor's office] to have the surgical staples removed from my wound. In the past, it's been a bit uncomfortable to have the staples removed, and I was not looking forward to this experience. Not only that, but I had been changing the dressing every two to four days and noticed that some of the staples looked a bit buried-- scabs had formed over some of them, and there was one that looked like it was lost in my belly button (which still exists!). The thought of the nurse digging for them totally wigged me out every time I saw them. It turns out, however, that having the staples removed three weeks on is actually less painful than having them removed within 10 days, as I had in the past. My theory is that there is less bruising by three weeks, so it's not really upsetting anything in that way.
However, having staples in for three weeks becomes a bit painful. On the Saturday prior to having them removed, I was starting to get some nasty stinging/burning sensation around near to my wound. It wasn't a consistent pain, and only really bothered me when I tried to stand or walk. Suffice to say, I stayed at home most days last week, and only went out when I needed something. Once the staples were removed, I noticed not only did the stinging/burning pain go away, but I was also able to finally stand up much straighter. And now that it's been a few days, I am back to standing and walking fairly normally.
So the staple removal turned out to be uneventful, though my wigging out a bit (I think I kept wincing and clenching my fists like I was being tortured) did not go unnoticed by the nurse. She kept asking if I was OK and needed a break. I assured her I was OK, and that I was just a little wigged out by the experience and the fact that my wound virtually has no feeling. The numbness of my wound has freaked me out for years, and I always get uncomfortable when people are poking at my tummy, or if I have to touch it more than simply rubbing it with a flat hand.
While I was there, the nurse also noticed the stitches from the incisions that were made to remove my Hickman line. They were supposed to be dissolve-able stitches, but almost three weeks later they were still there. The nurse kindly offered to take them out because she said if they had not dissolved by then, they were not going to dissolve on their own. Both the incisions are looking much better, and I no longer have to worry about the stitches catching on my shirt; I just have two more scars to add to the collection.
And speaking of scars, by new belly scar looks much, much neater than my previous ones. The scar from my first surgery was about five millimetres wide, and about eight inches long. The scar from my second surgery was directly on top of my previous incision, but was only about three millimetres wide. One of the surgeons--the one I dubbed "the serious surgeon" because of his overly serious and dry demeanour--had mentioned that they cleaned up my scars from the previous surgeries. Because of the way the wound was stapled, I could not really see what they had done, but since it has settled, I noticed that 1) my old scars are completely gone; 2) my new scar is only two millimetres or so wide. I'm guessing once it has faded, it will be virtually invisible compared to my previous two.
Other than work and surgery appointments, I have not been up to much--other than gaining weight. I don't have a proper scale at home, but I do have Wii Fit Plus which has a weight-tracking capability. I decided to weigh myself the first weekend I came home from surgery. I was only up about one kilogram in that first week. Then Friday, 12 days later, I decided that I would weigh myself again. In that 12 days, I managed to pack on 10 pounds, roughly 4.5kg! That puts me near 45kg total, which is nearly halfway back to my normal weight of 50kg. So I guess my week of not going out too much and continuing to drink my supplement drinks has paid off. Even my smallest pair of jeans now fit without a belt! Win!
Perhaps when I have a minute, I will share how you, too, can gain 10 pounds in 12 days!
I went back to work last Monday. By went back to work, I mean logged on from home as I don't think I'm technically allowed to carry the weight of my laptop plus power adapter for a total of eight weeks post-surgery. Luckily, I work for a company with flexible working practices, including the ability to work from home. This has been helpful not only from my recovery standpoint, but also when I was not feeling well enough to make the trek to the office, but not poorly enough to take a sick day.
The first week back went pretty well. I'll be honest, I was pretty useless the first few days. I was trying to regain my bearings--turns out a lot can change in three months--and refocus on some of the activities I was working on prior to being hospitalised. Whilst I'm now getting plenty of calories, which in theory should make it easier to concentrate, I've not had to concentrate much in the past three months. So the first few days were a bit challenging. Though I did find meetings easier to participate in than they were before I went to hospital because I'm no longer dealing with pain/discomfort.
By the end of the week, I had regained my bearings and met with several people who were able to steer me in the right direction in terms of the work I should be focusing on in the immediate term, and some things to think about for the mid- to long-term. While I'm still struggling to concentrate for a solid workday, I feel I'm doing better, and I think once I'm back to the office with fewer distractions, I will be functioning better than I was earlier this year.
I should point out that no one has forced, or even asked, me to return to work so soon (I'm only in week four of my recovery). I have no idea what I would have done to entertain, but not overexert myself for the six weeks after my dad went back to the States. I suppose I could have done a lot of baking, walking or knitting, but I was actually looking forward to using my brain a bit.
On Friday, I went to the surgery [doctor's office] to have the surgical staples removed from my wound. In the past, it's been a bit uncomfortable to have the staples removed, and I was not looking forward to this experience. Not only that, but I had been changing the dressing every two to four days and noticed that some of the staples looked a bit buried-- scabs had formed over some of them, and there was one that looked like it was lost in my belly button (which still exists!). The thought of the nurse digging for them totally wigged me out every time I saw them. It turns out, however, that having the staples removed three weeks on is actually less painful than having them removed within 10 days, as I had in the past. My theory is that there is less bruising by three weeks, so it's not really upsetting anything in that way.
However, having staples in for three weeks becomes a bit painful. On the Saturday prior to having them removed, I was starting to get some nasty stinging/burning sensation around near to my wound. It wasn't a consistent pain, and only really bothered me when I tried to stand or walk. Suffice to say, I stayed at home most days last week, and only went out when I needed something. Once the staples were removed, I noticed not only did the stinging/burning pain go away, but I was also able to finally stand up much straighter. And now that it's been a few days, I am back to standing and walking fairly normally.
So the staple removal turned out to be uneventful, though my wigging out a bit (I think I kept wincing and clenching my fists like I was being tortured) did not go unnoticed by the nurse. She kept asking if I was OK and needed a break. I assured her I was OK, and that I was just a little wigged out by the experience and the fact that my wound virtually has no feeling. The numbness of my wound has freaked me out for years, and I always get uncomfortable when people are poking at my tummy, or if I have to touch it more than simply rubbing it with a flat hand.
While I was there, the nurse also noticed the stitches from the incisions that were made to remove my Hickman line. They were supposed to be dissolve-able stitches, but almost three weeks later they were still there. The nurse kindly offered to take them out because she said if they had not dissolved by then, they were not going to dissolve on their own. Both the incisions are looking much better, and I no longer have to worry about the stitches catching on my shirt; I just have two more scars to add to the collection.
And speaking of scars, by new belly scar looks much, much neater than my previous ones. The scar from my first surgery was about five millimetres wide, and about eight inches long. The scar from my second surgery was directly on top of my previous incision, but was only about three millimetres wide. One of the surgeons--the one I dubbed "the serious surgeon" because of his overly serious and dry demeanour--had mentioned that they cleaned up my scars from the previous surgeries. Because of the way the wound was stapled, I could not really see what they had done, but since it has settled, I noticed that 1) my old scars are completely gone; 2) my new scar is only two millimetres or so wide. I'm guessing once it has faded, it will be virtually invisible compared to my previous two.
 |
| Me at nearly 45kg |
Perhaps when I have a minute, I will share how you, too, can gain 10 pounds in 12 days!
29 August 2011
Home Sweet Home
I've been out of hospital for a bit over a week now, and I have to say I'm enjoying my new-found freedom. It has a been bit surreal sleeping in my own bed, enjoying my own shower and reacquainting myself with every nook and cranny of the place my boyfriend and I lovingly refer to as "tiny flat."
Last Monday I got the all clear from the surgeons who said I could leave that day. The only loose ends I needed to tie up were getting the Hickman line removed and getting a few week's worth of prescriptions to hold me over until I had a chance to get an appointment with a GP at my local surgery. Both went relatively smoothly, though removing the Hickman line was a bit interesting.
I was a bit nervous about having the Hickman Line removed for one reason or another. I mostly was worried it was going to feel really weird when it was moving out of the vein in my neck and under the skin on my chest. The first thing the lady did was feel around on my chest for where the cuff held the line in place. She needed to find this so she could inject some anaesthetic and make an incision to remove the line. Unfortunately, the anaesthetic stings like hell, and she didn't find the right place the first time. Not only that, but she didn't realise it was the wrong place until she had done a considerable amount of digging which I could feel against my sternum. It wasn't that it hurt, but it felt incredibly weird.
Eventually she found the cuff was actually located very closely to the exit site for the line, and once she numbed that area up, and made the incision, it was only a matter of seconds before the line was out. And because I had been injected with an incredible amount of anaesthetic, I didn't feel any part of it coming out--in fact, I hadn't realised it had been removed until she said all was over and showed me the line. She then proceeded to stitch me up, and told me to keep lying down for at least 30 minutes to minimise bleeding.
Once I got wheeled back to the bay, I noticed the dietitian had kindly dropped off a box of supplement drinks. I was a bit worried at first because the side of the box said strawberry, and I already have something like 72 bottles of strawberry flavoured Fortisip Compacts at home. Luckily, it was only that the box said strawberry on the side, and she had provided me with a variety of different Fortisip and Fortijuce flavours which I've been trying out over the past week. It turns out these drinks are much more palatable when I'm not feeling completely rubbish, and I've been managing three a day--an extra 900 calories total--quite easily.
Since I've been home, I've been keeping relatively busy. My dad has been here to help me carry things. Since I have an 8-inch incision running vertically down my abdomen, I am not really supposed to be lifting anything more than 10 pounds, or partaking in strenuous activities. This means that food shopping by myself is out, and I can't do too much housework. I have been managing to get out for walks around Richmond and the local area, and participating in "light" tourist activities such as a boat ride down the Thames from here to Hampton Court. I've also been cooking again, which has been really nice.
In the past week, we've enjoyed a number of delicious, home-cooked meals:
Tuesday - Spaghetti Pie and Garlic Cheese Bread
Wednesday - African Drumsticks (a Nigella recipe) and Long Grain Rice
Thursday - Yellow Curry Chicken and Jasmine Rice
Friday - Orange Glazed Pork Chops with Baked Sweet Potatoes
Saturday - Meat Loaf with Creamed Peas and Potatoes
Sunday - Meat Loaf sandwiches with Chips and Onion Rings
Not only that, but I've been able to enjoy meals out again, which has been really nice. Today, my boyfriend and I had what I'm going to call "America Day" where we went to an American deli for sandwiches followed by a trip to an American bakery. The deli--the Pickle and Rye in East Sheen--has a brilliant sandwich menu. I went for the BBQ pulled pork sandwich, and my partner opted for The Toronto. Both sandwiches were impressively large (how American of them!) and were served with a proper dill pickle spear on the side. I love dill pickles, and was quite pleased to finally have two proper dill spears (my boyfriend kindly gave me his--apparently he has not caught onto the brilliance of these things). The BBQ sandwich was also good--really good. The meat was incredibly tender, perfectly sauced and piled nicely on a soft roll with some lettuce and home made coleslaw. I was a bit sceptical about the coleslaw at first, but it offered a nice peppery flavour to the sandwich which paired well with the BBQ pork.
The American bakery--Outsider Tart in Chiswick--is a favourite place to visit on Bank Holiday Mondays. They offer a great variety of baked items one typically finds in America (whoopie pies, loads of cookies, certain kinds of cakes, etc.), and they make amazing coffee drinks. Seriously, trekking to Outsider Tart for the coffee alone is worth it. I've not had a latte with milk so smooth since I worked at Ancora Coffee Roasters my last year of university. But, if you're going to trek to Chiswick for coffee, you may as well enjoy some delicious American baked goods as well. Today we picked up two chocolate cupcakes with vanilla frosting, a lime curd bar (similar to a lemon bar but with lime) and some sort of apple crunch cake. Obviously my hunger is getting the better of me since I picked two items for myself, but we also got something for my dad, hence the four in total.
So my recovery is going remarkably well in all. I've not really used any pain relievers over the past week, and if I have it's only been paracetamol. I have a follow-up with the GP Friday to get my prescriptions sorted out, and another appointment the following Friday to have my staples removed. In the meantime I'm waiting for a follow-up with my gastro consultant and the dietitians in Kingston to see how I manage my disease going forward, and optimise my diet so I can get back to a healthy 50 kilos or so before too long.
Even though I have a load of appointments to follow-up on, at least it's been a nice change to be out of hospital and getting on with a semi-normal life.
Last Monday I got the all clear from the surgeons who said I could leave that day. The only loose ends I needed to tie up were getting the Hickman line removed and getting a few week's worth of prescriptions to hold me over until I had a chance to get an appointment with a GP at my local surgery. Both went relatively smoothly, though removing the Hickman line was a bit interesting.
I was a bit nervous about having the Hickman Line removed for one reason or another. I mostly was worried it was going to feel really weird when it was moving out of the vein in my neck and under the skin on my chest. The first thing the lady did was feel around on my chest for where the cuff held the line in place. She needed to find this so she could inject some anaesthetic and make an incision to remove the line. Unfortunately, the anaesthetic stings like hell, and she didn't find the right place the first time. Not only that, but she didn't realise it was the wrong place until she had done a considerable amount of digging which I could feel against my sternum. It wasn't that it hurt, but it felt incredibly weird.
Eventually she found the cuff was actually located very closely to the exit site for the line, and once she numbed that area up, and made the incision, it was only a matter of seconds before the line was out. And because I had been injected with an incredible amount of anaesthetic, I didn't feel any part of it coming out--in fact, I hadn't realised it had been removed until she said all was over and showed me the line. She then proceeded to stitch me up, and told me to keep lying down for at least 30 minutes to minimise bleeding.
Once I got wheeled back to the bay, I noticed the dietitian had kindly dropped off a box of supplement drinks. I was a bit worried at first because the side of the box said strawberry, and I already have something like 72 bottles of strawberry flavoured Fortisip Compacts at home. Luckily, it was only that the box said strawberry on the side, and she had provided me with a variety of different Fortisip and Fortijuce flavours which I've been trying out over the past week. It turns out these drinks are much more palatable when I'm not feeling completely rubbish, and I've been managing three a day--an extra 900 calories total--quite easily.
Since I've been home, I've been keeping relatively busy. My dad has been here to help me carry things. Since I have an 8-inch incision running vertically down my abdomen, I am not really supposed to be lifting anything more than 10 pounds, or partaking in strenuous activities. This means that food shopping by myself is out, and I can't do too much housework. I have been managing to get out for walks around Richmond and the local area, and participating in "light" tourist activities such as a boat ride down the Thames from here to Hampton Court. I've also been cooking again, which has been really nice.
In the past week, we've enjoyed a number of delicious, home-cooked meals:
Tuesday - Spaghetti Pie and Garlic Cheese Bread
Wednesday - African Drumsticks (a Nigella recipe) and Long Grain Rice
Thursday - Yellow Curry Chicken and Jasmine Rice
Friday - Orange Glazed Pork Chops with Baked Sweet Potatoes
Saturday - Meat Loaf with Creamed Peas and Potatoes
Sunday - Meat Loaf sandwiches with Chips and Onion Rings
Not only that, but I've been able to enjoy meals out again, which has been really nice. Today, my boyfriend and I had what I'm going to call "America Day" where we went to an American deli for sandwiches followed by a trip to an American bakery. The deli--the Pickle and Rye in East Sheen--has a brilliant sandwich menu. I went for the BBQ pulled pork sandwich, and my partner opted for The Toronto. Both sandwiches were impressively large (how American of them!) and were served with a proper dill pickle spear on the side. I love dill pickles, and was quite pleased to finally have two proper dill spears (my boyfriend kindly gave me his--apparently he has not caught onto the brilliance of these things). The BBQ sandwich was also good--really good. The meat was incredibly tender, perfectly sauced and piled nicely on a soft roll with some lettuce and home made coleslaw. I was a bit sceptical about the coleslaw at first, but it offered a nice peppery flavour to the sandwich which paired well with the BBQ pork.
The American bakery--Outsider Tart in Chiswick--is a favourite place to visit on Bank Holiday Mondays. They offer a great variety of baked items one typically finds in America (whoopie pies, loads of cookies, certain kinds of cakes, etc.), and they make amazing coffee drinks. Seriously, trekking to Outsider Tart for the coffee alone is worth it. I've not had a latte with milk so smooth since I worked at Ancora Coffee Roasters my last year of university. But, if you're going to trek to Chiswick for coffee, you may as well enjoy some delicious American baked goods as well. Today we picked up two chocolate cupcakes with vanilla frosting, a lime curd bar (similar to a lemon bar but with lime) and some sort of apple crunch cake. Obviously my hunger is getting the better of me since I picked two items for myself, but we also got something for my dad, hence the four in total.
So my recovery is going remarkably well in all. I've not really used any pain relievers over the past week, and if I have it's only been paracetamol. I have a follow-up with the GP Friday to get my prescriptions sorted out, and another appointment the following Friday to have my staples removed. In the meantime I'm waiting for a follow-up with my gastro consultant and the dietitians in Kingston to see how I manage my disease going forward, and optimise my diet so I can get back to a healthy 50 kilos or so before too long.
Even though I have a load of appointments to follow-up on, at least it's been a nice change to be out of hospital and getting on with a semi-normal life.
16 August 2011
Things are Progressing
I realise that it's been awhile since I last updated. Well, to be honest, not much has been happening in the past week; that is, until today.
Last week the various teams of doctors around here had conflicting opinions on how they wanted to treat me. I couldn't even tell who was actually in charge of my care. There was a gastro consultant who had come round who confirmed the point that I needed surgery, and there was a gastro registrar who seemed to be working more closely with the dietitians who wasn't necessarily convinced that surgery was the only option, and wanted to at least do some more testing, which involved another MRI. The MRI showed that nothing had changed since the last one in April.
Yesterday, when the gastro registrar made his ward round, he said he was ready to send me on my way. I was a bit confused by this as I have barely stabilised my weight since I've been at St. George's, let alone actually gained. Not only that, but I would have been reliant on maintaining my weight by oral intake alone because the home PN program takes six to eight weeks to set up, and I've only been here for a little under two weeks. Luckily(?), I was a bit sick over the weekend, and the registrar no longer thought it was a good idea to send me home.
That meant I got to be here for ward rounds today, which were very exciting. First, the gastro consultant and his team came round. They informed me that the surgeon was back from his holidays and would be around to see me this afternoon. They also informed me that I could be having surgery as soon as tomorrow. I was a bit overwhelmed by this news, but also a bit excited. The consultant said I should prepare all my questions for the visit with the surgeon in the afternoon.
Turns out I didn't really have that much time to prepare for the visit with the surgeon, but to be honest, I've had two small bowel resections, one with a right hemicolectomy (meaning the right side of my large intestine is gone), done in the past and I have a rough idea what to expect. It was kind of funny when the surgeon stopped by, I was on Skype over the phone with my dad, and he got to eavesdrop on the entire conversation. He's actually gotten to listen in on a few random conversations I've had with staff here because no one realises I'm on the phone when they stop by.
My main question for the surgeon was whether he thought I was fit enough for surgery. He said given my current health situation, I probably won't get much healthier, and could in fact lose ground if I decided to wait. Of course, there are risks associated with surgery, as there are with any surgery. These include bleeding, infection and the possibility of a reversible ileostomy (i.e. a poo bag that would be attached to my stomach), that would require further surgery to reverse. Knowing these risks, I'm still ready to have the surgery, and hopefully get back to a normal life soon, and since I'm having this done now, I may actually be well enough to go home for Thanksgiving! I can't tell you how disappointed I was at first when I thought I'd be stuck here for the holiday (as previous posts have pointed out, I love stuffing my face at every opportunity, and Thanksgiving really is the perfect holiday for this).
Otherwise, my stay at St. George's has been uneventful. There were a lot of discharges on the ward yesterday, and half the people in my bay are new. Two of them are also sufferers of IBDs, one with Crohn's the other colitis.
Yesterday I was served the most "interesting" pudding. It was supposed to be butterscotch rice pudding, but I think it looked more like sick. And it really didn't taste of anything. What do you think: pudding or sick?
Pudding or sick? You decide.
Last week the various teams of doctors around here had conflicting opinions on how they wanted to treat me. I couldn't even tell who was actually in charge of my care. There was a gastro consultant who had come round who confirmed the point that I needed surgery, and there was a gastro registrar who seemed to be working more closely with the dietitians who wasn't necessarily convinced that surgery was the only option, and wanted to at least do some more testing, which involved another MRI. The MRI showed that nothing had changed since the last one in April.
Yesterday, when the gastro registrar made his ward round, he said he was ready to send me on my way. I was a bit confused by this as I have barely stabilised my weight since I've been at St. George's, let alone actually gained. Not only that, but I would have been reliant on maintaining my weight by oral intake alone because the home PN program takes six to eight weeks to set up, and I've only been here for a little under two weeks. Luckily(?), I was a bit sick over the weekend, and the registrar no longer thought it was a good idea to send me home.
That meant I got to be here for ward rounds today, which were very exciting. First, the gastro consultant and his team came round. They informed me that the surgeon was back from his holidays and would be around to see me this afternoon. They also informed me that I could be having surgery as soon as tomorrow. I was a bit overwhelmed by this news, but also a bit excited. The consultant said I should prepare all my questions for the visit with the surgeon in the afternoon.
Turns out I didn't really have that much time to prepare for the visit with the surgeon, but to be honest, I've had two small bowel resections, one with a right hemicolectomy (meaning the right side of my large intestine is gone), done in the past and I have a rough idea what to expect. It was kind of funny when the surgeon stopped by, I was on Skype over the phone with my dad, and he got to eavesdrop on the entire conversation. He's actually gotten to listen in on a few random conversations I've had with staff here because no one realises I'm on the phone when they stop by.
My main question for the surgeon was whether he thought I was fit enough for surgery. He said given my current health situation, I probably won't get much healthier, and could in fact lose ground if I decided to wait. Of course, there are risks associated with surgery, as there are with any surgery. These include bleeding, infection and the possibility of a reversible ileostomy (i.e. a poo bag that would be attached to my stomach), that would require further surgery to reverse. Knowing these risks, I'm still ready to have the surgery, and hopefully get back to a normal life soon, and since I'm having this done now, I may actually be well enough to go home for Thanksgiving! I can't tell you how disappointed I was at first when I thought I'd be stuck here for the holiday (as previous posts have pointed out, I love stuffing my face at every opportunity, and Thanksgiving really is the perfect holiday for this).
Otherwise, my stay at St. George's has been uneventful. There were a lot of discharges on the ward yesterday, and half the people in my bay are new. Two of them are also sufferers of IBDs, one with Crohn's the other colitis.
Yesterday I was served the most "interesting" pudding. It was supposed to be butterscotch rice pudding, but I think it looked more like sick. And it really didn't taste of anything. What do you think: pudding or sick?
06 August 2011
A Change of Scenery
Yesterday, I was transferred to St. George's hospital in Tooting to hopefully get me on my way to resuming my TPN treatment at home. The transfer was a bit hectic. I was given about five minute's notice at Kingston, so I had to frantically pack my things and get ready. Turns out I accumulated a lot of stuff in the two months I was there.
I've had mixed feelings about the move so far. Tooting isn't the nicest neighbourhood, and I no longer have the privacy of my own room. On the other hand, I do think the nurses here are better at dealing with Hickman lines and administering TPN. St. George's also has the advantage of having specialist teams for pretty much everything.
After I arrived, a junior doctor sat with me for a bit to get my history. They had my notes from Kingston, but he wanted to get a bit more information for himself, and who am I to deny a Q&A session with a student if they stand to learn something (unless, of course, they are trying to stick cannulas in my arm)? Surprisingly, someone from the dietitic team also came by to introduce herself and let me know the entire team would be round Tuesday to get me on my way. I still need to figure out whether St. George's will also be taking on my surgical case, or whether I will be back at Kingston for that, but I imagine I have a few months before I have to worry about that.
The worst part of my stay so far is that I am in a bay with five other women. The lack of privacy doesn't bother me as much as they amount of noise some of them make. One likes to listen to her TV without the provided headphones. Not only that, but she likes to listen to it very loudly. Another woman makes groaning noises through the night as though she is in some in incredible amount of pain. Oddly, she does not make any of these noises during the day, when she seems to do most of her sleeping (and she wonders why she had a rubbish night's sleep). She also has a habit of closing the windows in the room even though it's roasting in here. I have a bed right by the window, am wearing shorts and a t-shirt and am just comfortable, and the nurses agreed with me that it is warm in here. Lastly, there is a crazy lady who just randomly came over to my bed last night for no reason. I think she tried talking to me, but she doesn't speak English, so I had no idea what she was on about. She also made a mess on the floor after lunch. Luckily I missed most of that event.
I really hope the home parental nutrition treatment sorted out quickly, and I can get back to a semi-normal life in Richmond soon. I don't think I can retain my sanity for much more than a week in this place.
I've had mixed feelings about the move so far. Tooting isn't the nicest neighbourhood, and I no longer have the privacy of my own room. On the other hand, I do think the nurses here are better at dealing with Hickman lines and administering TPN. St. George's also has the advantage of having specialist teams for pretty much everything.
After I arrived, a junior doctor sat with me for a bit to get my history. They had my notes from Kingston, but he wanted to get a bit more information for himself, and who am I to deny a Q&A session with a student if they stand to learn something (unless, of course, they are trying to stick cannulas in my arm)? Surprisingly, someone from the dietitic team also came by to introduce herself and let me know the entire team would be round Tuesday to get me on my way. I still need to figure out whether St. George's will also be taking on my surgical case, or whether I will be back at Kingston for that, but I imagine I have a few months before I have to worry about that.
The worst part of my stay so far is that I am in a bay with five other women. The lack of privacy doesn't bother me as much as they amount of noise some of them make. One likes to listen to her TV without the provided headphones. Not only that, but she likes to listen to it very loudly. Another woman makes groaning noises through the night as though she is in some in incredible amount of pain. Oddly, she does not make any of these noises during the day, when she seems to do most of her sleeping (and she wonders why she had a rubbish night's sleep). She also has a habit of closing the windows in the room even though it's roasting in here. I have a bed right by the window, am wearing shorts and a t-shirt and am just comfortable, and the nurses agreed with me that it is warm in here. Lastly, there is a crazy lady who just randomly came over to my bed last night for no reason. I think she tried talking to me, but she doesn't speak English, so I had no idea what she was on about. She also made a mess on the floor after lunch. Luckily I missed most of that event.
I really hope the home parental nutrition treatment sorted out quickly, and I can get back to a semi-normal life in Richmond soon. I don't think I can retain my sanity for much more than a week in this place.
03 August 2011
Bloody Hell, It's Hot
It's been sweltering here in the UK over the past few days. OK, I know if you're living in the Midwest of the US at the moment, you're thinking, "you have no idea what we're going through right now," but you have to understand that this is NOT normal for the UK. Living in Wisconsin, I expected stretches of hot spells where it was 90°F (32°C) and the heat index exceeded 100°F (38°C). Whereas here in the UK, I never really expect the temperature to exceed 80°F (27°C), let alone get that hot and be really muggy.
I guess the hot spell wouldn't seem so bad if I was in a hospital that had air conditioning. I guess the people building the hospital also didn't think the temperatures here would exceed 30°C too often, and did not see air conditioning as a necessity. I'm happy I have some experience dealing with this, as it doesn't seem that many of the natives are coping as well as me. And I can only imagine what the nurses are going through with all the running around they have to do.
At least this isn't Geneva, Switzerland. I spent a few weeks there last summer when my boyfriend lived there, and there was quite a heatwave the second week I was there. There is virtually no air conditioning anywhere in that city (not even the mall was air conditioned!). The best bets for relief were the trams, some buses and McDonald's. Luckily, McDonald's had the Cornetto McFlurry at the time, which is probably the best McFlurry ever, aside from maybe the Oreo McFlurry they have during the "Tastes of America" campaign in the UK. The worse I've had was in Amsterdam, some horrible Dole fruit cocktail McFlurry (or so it seemed, I think it was branded as Chiquita, which I thought meant banana and chocolate). Sadly, McFlurries in the US pale in comparison to those offered in Europe, as do the speciality burgers. Anyway, I digress, the McFlurries in Geneva and the special "snack" burgers (they had one with mozzarella, basil and roasted tomato) gave us plenty of excuses to escape the heat.
At least Britain is finally getting a taste of summer. Before we know it, tomorrow probably, it will be gone again.
I guess the hot spell wouldn't seem so bad if I was in a hospital that had air conditioning. I guess the people building the hospital also didn't think the temperatures here would exceed 30°C too often, and did not see air conditioning as a necessity. I'm happy I have some experience dealing with this, as it doesn't seem that many of the natives are coping as well as me. And I can only imagine what the nurses are going through with all the running around they have to do.
At least this isn't Geneva, Switzerland. I spent a few weeks there last summer when my boyfriend lived there, and there was quite a heatwave the second week I was there. There is virtually no air conditioning anywhere in that city (not even the mall was air conditioned!). The best bets for relief were the trams, some buses and McDonald's. Luckily, McDonald's had the Cornetto McFlurry at the time, which is probably the best McFlurry ever, aside from maybe the Oreo McFlurry they have during the "Tastes of America" campaign in the UK. The worse I've had was in Amsterdam, some horrible Dole fruit cocktail McFlurry (or so it seemed, I think it was branded as Chiquita, which I thought meant banana and chocolate). Sadly, McFlurries in the US pale in comparison to those offered in Europe, as do the speciality burgers. Anyway, I digress, the McFlurries in Geneva and the special "snack" burgers (they had one with mozzarella, basil and roasted tomato) gave us plenty of excuses to escape the heat.
At least Britain is finally getting a taste of summer. Before we know it, tomorrow probably, it will be gone again.
01 August 2011
Me at 40 Kilos
I've made some progress on the weight-gaining front over the past few weeks, and thought I would celebrate my return to 40kg with a photo. Actually, I'm a bit over at 40.55kg, which brings my net gain to .55kg since I was first admitted to hospital, and total gain to about 4kg (my lowest was 36.5kg a few weeks ago).I'm still looking rather thin, but I am starting to fill out a bit. I'm hoping in the next week or two that the jeans I'm wearing in the photo will actually fit. At this point, I can't really walk more than a few feet before they start sliding down. Too bad the jeans-around-the-ankles look isn't in fashion.
The IV I'm hooked up to in the photo isn't actually my TPN, but the last dose of antibiotics used to treat the infection in my Hickman line. As you can see, the beauty of my line is that it is fairly unobtrusive, and isn't too noticeable under my clothing (unless, of course, I'm actually hooked up to an IV at the time).
I survived eating the piece of roast chicken breast at lunch yesterday. I did feel a bit uncomfortable in the evening, but I think it is more a matter of my digestive system getting used to an increased volume of food. It's a bit of a struggle to eat much after you've not eaten normally for more than three months! The important thing is that everything seemed to settle fine in the end, and I really enjoyed that piece of chicken.
31 July 2011
Making a Run for It
The past few days have been quite good for me, and I'm starting to feel increasingly positive about my current course of treatment, and life in general.
On Friday, I managed to make that bit of a runner I mentioned in my last post to the Asda down the road. I tried to be strategic about my journey which meant walking the 1/2 mile there, and once I acquired my shopping, take the bus back. This turned out to be a better idea than I initially thought because I had not realised how weak my leg muscles had gotten until I tried to run across the road to catch the bus back. As I was trying to run, my legs just seemed to stop working and I nearly fell over in the street. Luckily, I managed to quickly regain my balance and still made it to the bus stop in time. Now I'm determined to focus on taking walks everyday to regain some basic level of strength in my legs, and perhaps try some squats and lunges next week once my legs start feeling a bit stronger. Ultimately, I want to ensure I'm in top form before the surgery.
The shopping trip itself was quite successful, even though I'm certain every chav (white trash in American English) in Kingston was there. I picked up a box of Coco Pops, some fixings for peanut butter and jelly (jam) sandwiches and Skittles. Since I've been eating a bit again, I wanted to have a few options other than mashed potatoes and gravy available, so I figured PB&J always went down well in the past when I had flares, so why not try that now? And I have to say, those sandwiches have been quite tasty.
I've also been trying a few more foods from the food trolley here in hospital. Friday I had the macaroni cheese which was not only tasty, but seemed to settle quite well. Last night I had the pasta bolognese, but because I'm still a bit weary of eating meat, I really only ate the pasta. At least I still got some flavour from the sauce. Today I am going to try a bit of chicken at lunch. Hopefully it will settle well OK. It's been ages since I've had chicken, and because I'm not really eating meat, my food options are quite limited when it comes to the food trolley!
Other than making runners and fighting through crowds of chavs, I've been keeping myself busy with my current knitting project, which is a little more than two-thirds of the way complete, and a bit of reading. I recently finished a book called The White Tiger by Aravind Adiga which is about an Indian fellow who is writing a letter to the prime minister of China, telling him about his rise from a nobody in a small Northern Indian village to a successful entrepreneur in Bangalore in the south. What makes the book interesting is that the path he took to get there isn't what one might expect. The book is quite strange at first, but that's what really drew me in and made me want to download the full version.
I'm not quite sure what I'm going to read next, but I have plenty of samples on my Kindle to get me started, and I still have about 100 more rows left on my cowl before it's complete.
On Friday, I managed to make that bit of a runner I mentioned in my last post to the Asda down the road. I tried to be strategic about my journey which meant walking the 1/2 mile there, and once I acquired my shopping, take the bus back. This turned out to be a better idea than I initially thought because I had not realised how weak my leg muscles had gotten until I tried to run across the road to catch the bus back. As I was trying to run, my legs just seemed to stop working and I nearly fell over in the street. Luckily, I managed to quickly regain my balance and still made it to the bus stop in time. Now I'm determined to focus on taking walks everyday to regain some basic level of strength in my legs, and perhaps try some squats and lunges next week once my legs start feeling a bit stronger. Ultimately, I want to ensure I'm in top form before the surgery.
The shopping trip itself was quite successful, even though I'm certain every chav (white trash in American English) in Kingston was there. I picked up a box of Coco Pops, some fixings for peanut butter and jelly (jam) sandwiches and Skittles. Since I've been eating a bit again, I wanted to have a few options other than mashed potatoes and gravy available, so I figured PB&J always went down well in the past when I had flares, so why not try that now? And I have to say, those sandwiches have been quite tasty.
I've also been trying a few more foods from the food trolley here in hospital. Friday I had the macaroni cheese which was not only tasty, but seemed to settle quite well. Last night I had the pasta bolognese, but because I'm still a bit weary of eating meat, I really only ate the pasta. At least I still got some flavour from the sauce. Today I am going to try a bit of chicken at lunch. Hopefully it will settle well OK. It's been ages since I've had chicken, and because I'm not really eating meat, my food options are quite limited when it comes to the food trolley!
Other than making runners and fighting through crowds of chavs, I've been keeping myself busy with my current knitting project, which is a little more than two-thirds of the way complete, and a bit of reading. I recently finished a book called The White Tiger by Aravind Adiga which is about an Indian fellow who is writing a letter to the prime minister of China, telling him about his rise from a nobody in a small Northern Indian village to a successful entrepreneur in Bangalore in the south. What makes the book interesting is that the path he took to get there isn't what one might expect. The book is quite strange at first, but that's what really drew me in and made me want to download the full version.
I'm not quite sure what I'm going to read next, but I have plenty of samples on my Kindle to get me started, and I still have about 100 more rows left on my cowl before it's complete.
29 July 2011
Pole Dancing
After a four-day hiatus, I was finally restarted on the TPN last night. I was actually kind of enjoying not being hooked up to the IV overnight. It wasn't until I restarted last night that I remembered how nasty the TPN itself smells, which I'm pretty certain starts seeping through my pores after a few hours (lovely, I know). Regardless, I'm happy to be getting my 1600 calories, and 80 grams of fat (which is what makes the stuff smell) and all the other vitamin and mineral goodness that is coming through my line.
As a result of the break, the dietitian advised that we resume the drip over a 20-hour period so it wouldn't spike my blood sugar too high. We had managed to taper down to 14 hours by this past weekend, and I believe the plan is to go back to that this evening. I don't mind be tethered to the IV pole all that much, other than it means I can't really leave the sixth floor of the hospital. I guess it also means I have to drag the stupid thing around everywhere which can be a pain when trying to get washed. At least the line is in my chest and not my arm. Cannulas in the arm can be a right pain when you want to wash, but are hooked up and can't remove any of your clothing.
Yesterday was a rather good day for me. Not only was I feeling really good, but I managed to straighten a few points out with the doctor regarding my treatment as of late:
As a result of the break, the dietitian advised that we resume the drip over a 20-hour period so it wouldn't spike my blood sugar too high. We had managed to taper down to 14 hours by this past weekend, and I believe the plan is to go back to that this evening. I don't mind be tethered to the IV pole all that much, other than it means I can't really leave the sixth floor of the hospital. I guess it also means I have to drag the stupid thing around everywhere which can be a pain when trying to get washed. At least the line is in my chest and not my arm. Cannulas in the arm can be a right pain when you want to wash, but are hooked up and can't remove any of your clothing.
Yesterday was a rather good day for me. Not only was I feeling really good, but I managed to straighten a few points out with the doctor regarding my treatment as of late:
- When was the TPN actually resuming? There is a lot of miscommunication between the doctors and the nursing staff on this ward lately. It kind of makes me anxious to either get moved within hospital or moved to St. George's sooner. One of the doctors had told a nurse that the TPN could resume Tuesday, however, they had not written an order for it, and without the order, the nurses could not administer it. I do have to credit the nurse, though, she did ring the on-call doctor to see what they thought, but because they were not too familiar with my case regarding the TPN and infection, they thought best to hold off. Then Wednesday when the doctors stopped by, they had mentioned that TPN would be resuming that night. Well, I don't think the dietitians were on the ward at all that day, so there was no feed ready for administration. Then yesterday, I confirmed that because the blood work had been gathered in the morning and the dietitians had been round that it was, indeed, going to be administered. The doctor confirmed, but again, I think they forgot to write the order. Luckily, one of them was on-call last night, and that was sorted out (otherwise, I would have gotten a bit cranky, I think!).
- Why was my IV anti-sickness switched to oral anti-sickness? This just didn't make sense--to me, the nurse who was administering the drugs, or even the doctor when I enquired about it. I told the doctor that I didn't feel I needed to have the Cyclizine regularly any more, and she agreed to add it as an as-needed drug via IV. That will be more useful when I'm feeling really sick and unable to keep pills down (fingers crossed I'm getting past that point!).
- When could I have the cannula in my arm removed? I had to have this placed Monday to administer the antibiotics and give my Hickman line a rest. While I don't necessarily mind cannulas in the arms, this one was placed in the crook of my elbow and made it very uncomfortable to bend my arm. As a result, I had not even attempted to wash my hair for several days, and had joked with the doctor that I was worried about forming dreads soon. I struck a deal with the doctor that I could have it removed after I received a bag of IV fluids (I don't think she was too keen to see me with dreads).
- What was the source of the infection in my Hickman line? This one wasn't answered, but at least I asked, and I will ask again next week when they actually have the results of the cultures. I'm interested to know whether it was from the site or within the line itself, so if needed, I can question any dodgy action taken by the nurses or anyone else when they are near my line.
Today is shaping up to be another good day. I'm thinking about doing a bit of a runner to the nearby ASDA (British equivalent of Wal-Mart) to pick up some snacks that should be safe for me to eat. I think it will be nice to venture outside the perimeter of the hospital, even if it's not all that far, and only for a short time.
27 July 2011
Slowly Making Progress
Not a week goes by without some excitement in my hospital stay. Last week it was the 10 days of feeling completely rubbish, this weekend, it was an infection that developed in my Hickman line--the line used to give me my TPN. Luckily, this was caught reasonably early by one of the nurses that was looking after me Sunday. The other good thing is that I caught a fairly mild staph infection, and didn't have any real symptoms other than a fever on Sunday.
Unfortunately, my TPN feed had to be put on hold whilst I was treated with antibiotics, so I have not had any proper nutrition since the weekend. I was eating a bit at the weekend, but started getting a bit of tummy pain and vomiting which I wasn't sure was from overindulging at the weekend, or from the infection. Regardless, I've taken it easy over the past few days, and only started eating mashed potatoes again this afternoon. From what I understand, the TPN is supposed to resume this evening, so I should be back on track soon.
My consultant stopped by this morning and said they were going to try to move me to another ward within the hospital where the nursing staff are more used to dealing with Hickman and other central venous-access lines. This will hopefully keep me from getting another infection in the future. The problem is that while the nurses on this ward are really nice, and good at what they do, not all are trained on how to deal with this type of IV. Most always where sterile gloves when dealing with the TPN, but when administering IV drugs (mostly anti-sickness and now antibiotics) use regular gloves. Unfortunately, I'm not sure of the protocol, otherwise, I would be willing to question things a bit more.
Hopefully in the next week or so I will be transferred to St. George's in Tooting where they can get me prepared for at-home treatment. In a way, I think I should be a bit nervous about eventually dealing with this at home, but my parents and I managed when I had PICC lines (another type of central venous-access IV that is placed in the arm) in the past, so I think I should be able to deal with this once, if ever, I go home. And as long as I learn the proper techniques/protocols for dealing with the Hickman line, I should be able to minimise risk of future infections. At least the Hickman line will be easier for me to deal with on my own than a PICC line would have been because it comes out on my chest, so I have both hands free to deal with it.
On a good note, despite being sick most of last week, I did manage to gain about two kilograms. I think most of it was water weight as I was getting a bit dehydrated from being sick everyday, but I'll take any weight as long as I'm gaining at this point. I'm sure being off the TPN for two days this week will set me back slightly, but I should be able to get back on track soon enough. I'm just happy to be making some progress (my engagement ring even fits on the correct finger again!).
Unfortunately, my TPN feed had to be put on hold whilst I was treated with antibiotics, so I have not had any proper nutrition since the weekend. I was eating a bit at the weekend, but started getting a bit of tummy pain and vomiting which I wasn't sure was from overindulging at the weekend, or from the infection. Regardless, I've taken it easy over the past few days, and only started eating mashed potatoes again this afternoon. From what I understand, the TPN is supposed to resume this evening, so I should be back on track soon.
My consultant stopped by this morning and said they were going to try to move me to another ward within the hospital where the nursing staff are more used to dealing with Hickman and other central venous-access lines. This will hopefully keep me from getting another infection in the future. The problem is that while the nurses on this ward are really nice, and good at what they do, not all are trained on how to deal with this type of IV. Most always where sterile gloves when dealing with the TPN, but when administering IV drugs (mostly anti-sickness and now antibiotics) use regular gloves. Unfortunately, I'm not sure of the protocol, otherwise, I would be willing to question things a bit more.
Hopefully in the next week or so I will be transferred to St. George's in Tooting where they can get me prepared for at-home treatment. In a way, I think I should be a bit nervous about eventually dealing with this at home, but my parents and I managed when I had PICC lines (another type of central venous-access IV that is placed in the arm) in the past, so I think I should be able to deal with this once, if ever, I go home. And as long as I learn the proper techniques/protocols for dealing with the Hickman line, I should be able to minimise risk of future infections. At least the Hickman line will be easier for me to deal with on my own than a PICC line would have been because it comes out on my chest, so I have both hands free to deal with it.
On a good note, despite being sick most of last week, I did manage to gain about two kilograms. I think most of it was water weight as I was getting a bit dehydrated from being sick everyday, but I'll take any weight as long as I'm gaining at this point. I'm sure being off the TPN for two days this week will set me back slightly, but I should be able to get back on track soon enough. I'm just happy to be making some progress (my engagement ring even fits on the correct finger again!).
20 July 2011
A Rough 10 Days
The last week and a half has not been so good, hence no updates in that period.
I started the TPN 8 July, and after a visit from my GI consultant earlier that day, he seemed happy for me to go ahead and eat whatever I liked so long as I did not make myself too sick. Of course, after not eating any solid food for nearly a month, I was keen to try eating something. So I indulged in some mashed potatoes and gravy for dinner, Rice Krispies and bread with jam for breakfast, and more mashed potatoes and a yoghurt (if I was feeling hungry enough) for lunch over the course of the weekend. As far as I remembered, none of these types of foods had really bothered me prior to my admission to hospital, and I thought they would be OK. But I was wrong. By that Sunday afternoon, I was fighting some intense nausea that even the oral Cyclizine wasn't helping to quell. When I'd asked for it previously, it'd worked surprisingly well, especially compared to other oral anti-sickness I'd tried in the past. When it came time for another dose of anti-sickness, I smartened up and made sure to ask for intravenous Cyclizine. Not only was I hoping it would be stronger, but I had just been sick when I rang for the nurse, and I didn't think I could keep the pill down long enough for it to work.
Intravenous Cyclizine is amazing. Not only does it work well on the nausea, but when it first hits my bloodstream, I get the weirdest high from it. It's like everything in my body relaxes, and I could just blissfully fall asleep for a bit. It also makes it incredibly difficult to concentrate on a task for about the first 30 minutes it's in your bloodstream. Things like trying to message friends via phone, read emails or even talk to other people become a bit more work, and the falling asleep for a bit becomes the best option. Actually, spacing out and staring at the TV is also good, especially with some of the mind-numbing things that are on during the day.
After asking for Cyclizine pretty regularly for the past week, the doctors finally ended up prescribing it as a regular drug for me this past weekend. Yes, that's right, even though I've not touched any solid food since the weekend of 9 July, I've been fighting nasty abdominal cramping/pain and nausea ever since. Today is actually the first day in that time I don't feel horrible (touch wood!). Fingers crossed things will stay this way.
My GI consultant met with some colleagues at the Royal London Hospital to discuss my case and essentially get some second opinions on my behalf. The consensus is that I need to have surgery. However, I need to get my nutrition under control and start gaining weight first. Since this could take time, he is looking into transferring me to another hospital that is part of an NHS trust that has a program for administering TPN at home. He said it is also likely that I would have my surgery at the same hospital since they are more specialised in treating patients with digestive problems. I think I'd just be happy to leave this hospital for a bit to see some of the outside world; getting treatment to get on with life would be icing on the cake.
As an aside, and getting back to the original intent of this blog, the BBC recently published an article titled Americanisms: 50 of Your Most Noted Examples. Essentially, readers submitted American words or phrases that have seeped into British culture that really annoyed them. This was my favourite submission:
I started the TPN 8 July, and after a visit from my GI consultant earlier that day, he seemed happy for me to go ahead and eat whatever I liked so long as I did not make myself too sick. Of course, after not eating any solid food for nearly a month, I was keen to try eating something. So I indulged in some mashed potatoes and gravy for dinner, Rice Krispies and bread with jam for breakfast, and more mashed potatoes and a yoghurt (if I was feeling hungry enough) for lunch over the course of the weekend. As far as I remembered, none of these types of foods had really bothered me prior to my admission to hospital, and I thought they would be OK. But I was wrong. By that Sunday afternoon, I was fighting some intense nausea that even the oral Cyclizine wasn't helping to quell. When I'd asked for it previously, it'd worked surprisingly well, especially compared to other oral anti-sickness I'd tried in the past. When it came time for another dose of anti-sickness, I smartened up and made sure to ask for intravenous Cyclizine. Not only was I hoping it would be stronger, but I had just been sick when I rang for the nurse, and I didn't think I could keep the pill down long enough for it to work.
Intravenous Cyclizine is amazing. Not only does it work well on the nausea, but when it first hits my bloodstream, I get the weirdest high from it. It's like everything in my body relaxes, and I could just blissfully fall asleep for a bit. It also makes it incredibly difficult to concentrate on a task for about the first 30 minutes it's in your bloodstream. Things like trying to message friends via phone, read emails or even talk to other people become a bit more work, and the falling asleep for a bit becomes the best option. Actually, spacing out and staring at the TV is also good, especially with some of the mind-numbing things that are on during the day.
After asking for Cyclizine pretty regularly for the past week, the doctors finally ended up prescribing it as a regular drug for me this past weekend. Yes, that's right, even though I've not touched any solid food since the weekend of 9 July, I've been fighting nasty abdominal cramping/pain and nausea ever since. Today is actually the first day in that time I don't feel horrible (touch wood!). Fingers crossed things will stay this way.
My GI consultant met with some colleagues at the Royal London Hospital to discuss my case and essentially get some second opinions on my behalf. The consensus is that I need to have surgery. However, I need to get my nutrition under control and start gaining weight first. Since this could take time, he is looking into transferring me to another hospital that is part of an NHS trust that has a program for administering TPN at home. He said it is also likely that I would have my surgery at the same hospital since they are more specialised in treating patients with digestive problems. I think I'd just be happy to leave this hospital for a bit to see some of the outside world; getting treatment to get on with life would be icing on the cake.
As an aside, and getting back to the original intent of this blog, the BBC recently published an article titled Americanisms: 50 of Your Most Noted Examples. Essentially, readers submitted American words or phrases that have seeped into British culture that really annoyed them. This was my favourite submission:
"14. I caught myself saying "shopping cart" instead of shopping trolley today and was thoroughly disgusted with myself. I've never lived nor been to the US either. Graham Nicholson, Glasgow"Disgusted with yourself?! Really? Perhaps I should be disgusted with myself for adopting British-English spellings and using mostly British-English terms for things, essentially giving up my identity as an American? At least I'm holding onto my American pronunciations for words like "aluminium" and "laboratory."
08 July 2011
Things are Looking Up
Yesterday, I had the line placed that will be delivering my parenteral nutrition, which is called a Hickman line. It's a type of IV that has a tube which goes directly to the heart, and the other end comes outside the middle of my chest. I had the line placed under local anaesthetic, meaning I was just numbed in the appropriate places and fully conscious for the entire procedure. There were points during the procedure where I kind of wish I opted for the general anaesthetic, namely the bit where the guy placing the line said something about a knife and the next thing I knew he was going for my neck. Luckily, I didn't feel any pain during the procedure, so it wasn't a big deal, but it's a bit concerning when someone is cutting you with a knife in the neck and chest!
The procedure went fine, and I now have a suture in my neck from where they guided the line to the appropriate places, and of course the bit that actually comes out so that I can be hooked up to an IV. It's all a bit sore today, but I've been given a prescription for IV paracetamol which was been pretty good for the pain, and I'm hoping as the small incisions heal, the pain will go away.
I'll be starting the TPN itself this evening. Hopefully this will get me well on the way to finally gaining some weight back, and helping me feel a bit better. I no longer have to drink as many of the Modulen drinks, just one or two a day to keep my digestive system active, but that's it. Once I start gaining weight back, I will have a better idea when we can get onto the next step of surgery to finally fix the strictures have been causing me all these problems over the past few years.
Finally, it feels like we're making some progress.
05 July 2011
Something Has to Change
I'm not sure whether 16 consecutive days in the hospital is starting to get to me, or whether it's the fact that I feel worse now than I have since the beginning of this most recent stay, but I'm finding if difficult to stay optimistic.
As mentioned previously, I've lost 3kg since last week. Yesterday when the doctors came round, they seemed convinced that it was a problem with inconsistency in the scales, rather than me losing weight. So they had me try a different scale, and want me to use that one going forward for weigh-ins. Turns out that it registered roughly the same weight (actually about 1/2kg less than my Saturday weight), so now they realise that this treatment isn't working.
Despite this, they seem to have no concrete plan to start me on TPN yet. They felt because of the problem with the steroids over the weekend, the Modulen didn't get a fair chance. OK, fair enough, but even before the weekend I wasn't convinced it was helping me gain any weight. Not only that, but I've been struggling with abdominal pain since Saturday as a result of the steroid cock-up, and I've been unable to down more than five of the drinks a day, which amounts only to 1250 calories.
This has left me feeling incredibly tired and weak. It's a struggle for me to get washed in the mornings, getting cold water to mix the drinks is a chore, and yesterday after heading outside to get some sunshine and read for half an hour, I had to nap for 45 minutes because I was so worn out. I don't think I've felt so exhausted, day-in, day-out, in my life.
Not only that, but I got the most pitying look from one of the ward sisters this afternoon. After living here for most of the last month, the nurses here realise I'm not getting any healthier, and the ones that have actually looked after me (i.e. the ones I've talked to) realise I'm actually feeling worse. Unfortunately, they are fairly powerless, and can't do much to help other than provide me with anti-sickness medicine when I need it.
My partner, bless his heart, is involved and tried calling the doctors today to see what they are going to do for me. Unfortunately, he wasn't able to get a hold of anyone today, but hopefully he can talk to one of them tomorrow. I'm too exhausted to yell at the doctors myself, so his help is greatly appreciated.
As mentioned previously, I've lost 3kg since last week. Yesterday when the doctors came round, they seemed convinced that it was a problem with inconsistency in the scales, rather than me losing weight. So they had me try a different scale, and want me to use that one going forward for weigh-ins. Turns out that it registered roughly the same weight (actually about 1/2kg less than my Saturday weight), so now they realise that this treatment isn't working.
Despite this, they seem to have no concrete plan to start me on TPN yet. They felt because of the problem with the steroids over the weekend, the Modulen didn't get a fair chance. OK, fair enough, but even before the weekend I wasn't convinced it was helping me gain any weight. Not only that, but I've been struggling with abdominal pain since Saturday as a result of the steroid cock-up, and I've been unable to down more than five of the drinks a day, which amounts only to 1250 calories.
This has left me feeling incredibly tired and weak. It's a struggle for me to get washed in the mornings, getting cold water to mix the drinks is a chore, and yesterday after heading outside to get some sunshine and read for half an hour, I had to nap for 45 minutes because I was so worn out. I don't think I've felt so exhausted, day-in, day-out, in my life.
Not only that, but I got the most pitying look from one of the ward sisters this afternoon. After living here for most of the last month, the nurses here realise I'm not getting any healthier, and the ones that have actually looked after me (i.e. the ones I've talked to) realise I'm actually feeling worse. Unfortunately, they are fairly powerless, and can't do much to help other than provide me with anti-sickness medicine when I need it.
My partner, bless his heart, is involved and tried calling the doctors today to see what they are going to do for me. Unfortunately, he wasn't able to get a hold of anyone today, but hopefully he can talk to one of them tomorrow. I'm too exhausted to yell at the doctors myself, so his help is greatly appreciated.
03 July 2011
A Bit of a Setback
Yesterday was what I'm going to call "weigh day" on the ward where all the patients have to sit in this funny chair and get weighed. A few days ago I was starting to suspect that while the Modulen seems to be settling better in my stomach, and some of my other symptoms seem to be improving, that it wasn't quite doing it's job in terms of helping me gain weight. I guess things like my engagement ring sliding off my finger and generally feeling bonier are what led me to believe this, and I was a bit sad to have it confirmed yesterday. Turns out that I've lost a little over 3kg in the last week alone, going from 41.25kg down to 38.5kg.
Obviously, I'm a bit disappointed to learn this, as it's certainly a setback in my recovery. However, I'm going to keep my chin-up and look forward to having a chat with the doctors and dietitian tomorrow to see when they will start the TPN. It seems pretty obvious to me that is the only viable solution to get me to gain some weight while my gut heals. And I'm sure I will get to continue with my delicious Modulen in the meantime as a supplement. I mean, it's not really causing me to gain weight at the moment, so I see no reason why they should be worried about it causing me to gain too much (like that even seems possible given my current, skeletal state).
In other news, I'm turning my partner into a drug mule. When I had a chat with the consultant on Friday, we agreed to reduce the amount of steroid I am taking from 50 to 40mg per day. Turns out the ward doctor forgot to actually prescribe the new dosage! So yesterday, after enquiring with the nurse (who obviously has not authority to just give me the medicine), she tried to get a hold of the on-call/weekend doctor. Unfortunately, she was not able to get it sorted out, and after writhing in pain for the better part of the day as a result, I asked my boyfriend to bring some of the medicine in from home. It was a little too late, and I still felt pretty crap most of the day, but I am feeling much, much better today. I just cannot believe that happened though.
For those who've never been on courses of steroids, it's very dangerous to go from a high-dose to nil. In fact, I have a nifty, blue "Steroid Treatment Card" I carry in my purse that states:
Obviously, I'm a bit disappointed to learn this, as it's certainly a setback in my recovery. However, I'm going to keep my chin-up and look forward to having a chat with the doctors and dietitian tomorrow to see when they will start the TPN. It seems pretty obvious to me that is the only viable solution to get me to gain some weight while my gut heals. And I'm sure I will get to continue with my delicious Modulen in the meantime as a supplement. I mean, it's not really causing me to gain weight at the moment, so I see no reason why they should be worried about it causing me to gain too much (like that even seems possible given my current, skeletal state).
In other news, I'm turning my partner into a drug mule. When I had a chat with the consultant on Friday, we agreed to reduce the amount of steroid I am taking from 50 to 40mg per day. Turns out the ward doctor forgot to actually prescribe the new dosage! So yesterday, after enquiring with the nurse (who obviously has not authority to just give me the medicine), she tried to get a hold of the on-call/weekend doctor. Unfortunately, she was not able to get it sorted out, and after writhing in pain for the better part of the day as a result, I asked my boyfriend to bring some of the medicine in from home. It was a little too late, and I still felt pretty crap most of the day, but I am feeling much, much better today. I just cannot believe that happened though.
For those who've never been on courses of steroids, it's very dangerous to go from a high-dose to nil. In fact, I have a nifty, blue "Steroid Treatment Card" I carry in my purse that states:
"I am a patient on STEROID treatment which most not be stopped suddenlySuffice to say, I am going to have a few words with the doctor tomorrow.
- If you have been taking this medicine for more than three weeks, the dose should be reduced gradually when you stop taking steroids unless your doctor says otherwise.
- Read the patient information leaflet given with the medicine.
- Always carry this card with you and show it to anyone who treats you (for example a doctor, nurse, pharmacist or dentist). For one year after you stop the treatment, you must mention that you have taken steroids
- If you become ill, or if you come into contact with anyone who has an infections disease consult your doctor promptly. If you have never had chickenpox, you should avoid close contact with people who have chickenpox or shingles. If you do come into contact with chickenpox, see your doctor urgently.
- Make sure that the information on the card is kept up to date."
01 July 2011
How I've Been Keeping My Sanity (or At Least Trying)
I've been in hospital for 20 of the last days 23 days, and just realised now that today is the beginning of July. I guess the fact that I only just realised it is July indicates I've been keeping myself adequately busy and making the time fly by. That, or being in hospital so long is just making me crazy (I'm more inclined to believe this theory).
So what have I been up to these last 20 days? Well, let me tell you.
The first few days when I was originally admitted were spent assessing the extent of my current situation. This meant getting an abdominal x-ray to ensure I wasn't obstructed, getting a CT scan to see how extensive the inflammation in my small bowel is and also getting an MRI scan of my liver. The later test was previously scheduled to my hospital admission, and was related to my Crohn's only in that my GI suspected one of my medicines, 6-Mercaptapurine, was causing some issues with my liver enzyme levels (which can eventually lead to more long-term damage). Oddly enough, blood tests taken in this same initial admission period indicated that my liver enzyme levels had actually returned to normal levels, so the MRI probably wasn't all that necessary in the end. Too bad I didn't know that before hand, because I had a mini-meltdown toward the end of that test.
Once I got all the tests out of the way and got settled in, I resumed work on a cross-stitching project that I started either right before I moved, or shortly thereafter. Unfortunately, cross-stitching isn't one of my favourite crafting activities, but I did manage to finish the picture before I left the hospital the first time.
Additionally, I finished reading a book called The Immortal Life of Henrietta Lacks by Rebecca Skloot. This is a non-fiction book that talks about the story of a black woman whose cancer cells were harvested upon her death and created one of the most important cell lines in existence today. To add a human element to the story, the author goes to great lengths to get in touch with members of Henrietta's family to understand how the use of her cells affected them. It's definitely an interesting read, and really puts forth some interesting questions around ethics and science.
After finishing the cross-stitching project and completing the book, I started reading a few different samples of books on my Kindle. One book I did download and begin reading was The Curious Case of Benjamin Button and Other Tales of the Jazz Age by F. Scott Fitzgerald. I was inclined to download this title for two reasons: 1) I absolutely loved The Great Gatsby; 2) I was interested to see how different the short story was from the film (turns out they are a bit different!). However, I was released shortly after I finished these activities, so I had a bit of a reprieve, and actually ended up finishing this book at home.
Once I arrived home, I tried to take it easy for a few days, but I did manage to make it to a local yarn shop in St. Margaret's called Mrs. Moon's. I had a look at the website, and they had some interesting patterns and yarns, so I figured I'd take a short walk to see if I could pick up something to work on while I was recovering at home. I ended up selecting a pattern for a short-sleeved cardigan and bought a nice jewel-toned blue-green yarn for knitting. Unfortunately, I only had a few days at home to start this project. Turns out it is not worth knitting when you're feeling ill/tired and not completely with it. I ended up starting this particular cardigan four times before I got the counts of the stitches correct! Luckily, I managed to sort it out in the end, and I've nearly completed the cardigan since I began this second visit.
The other thing I've been doing this visit is more reading. This time I've completed a book called The Help by Kathryn Stockett. This is probably one of my favourite books since reading the Millenium Triology by Stieg Larsson when I first got my Kindle earlier this year. The Help is written from the perspectives of two black maids and a white woman in Jackson, Mississippi in the 1960s. The black women work as maids for friends of the white woman. The white woman aspires to be a writer, and manages to talk the black women into working with her to write a memoir about their lives as maids in The South. Not only are the stories that the black women have to tell interesting, but the everyday things that all these ladies face putting this memoir together give the book an edge-of-your-seat feeling at times (you have to keep in mind this is the same period Kennedy was shot and Martin Luther King, Jr. gave his famous "I Have a Dream" speech).
Now I need to start thinking about something else to do. I've downloaded and read a few more samples on my Kindle. One includes a book on project management, and another on some subject matter relating to an MBA. Neither have seemed interesting and worth downloading the full version. I have a few fiction book samples to look through that I downloaded based on recommendation from an article in the New York Times which includes titles Parisians by Graham Robb, Solar by Ian McEwan and Mr. Peanut by Adam Ross.
Ideally, if my concentration and focus were better, I wouldn't mind actually doing a bit of work. Unfortunately, I do not think I am getting quite enough calories in the day, or I'm still adjusting to my calorie intake, and it makes it difficult for me to focus on certain topics for work. I did manage to publish a report earlier this week, so I haven't been completely useless. :-)
In addition to my "extracurricular" activities, each day I get visits from the ward doctor and the dietitian. This visit I even got a visit from some surgeons to discuss options for the future.
In the meantime, I'm left to wait. We have to see if the Modulen diet is going to do the trick to help me gain weight, and if it doesn't we need to look more seriously into the total parenteral nutrition (TPN). The ward doctor indicated yesterday that the Modulen diet is more likely to be effective at helping me gain weight than the TPN, and it would also mean that I wouldn't have to be trapped in hospital until I've gained enough weight to determine next steps. So please keep your fingers crossed for me the Modulen does the trick!
So what have I been up to these last 20 days? Well, let me tell you.
The first few days when I was originally admitted were spent assessing the extent of my current situation. This meant getting an abdominal x-ray to ensure I wasn't obstructed, getting a CT scan to see how extensive the inflammation in my small bowel is and also getting an MRI scan of my liver. The later test was previously scheduled to my hospital admission, and was related to my Crohn's only in that my GI suspected one of my medicines, 6-Mercaptapurine, was causing some issues with my liver enzyme levels (which can eventually lead to more long-term damage). Oddly enough, blood tests taken in this same initial admission period indicated that my liver enzyme levels had actually returned to normal levels, so the MRI probably wasn't all that necessary in the end. Too bad I didn't know that before hand, because I had a mini-meltdown toward the end of that test.
Once I got all the tests out of the way and got settled in, I resumed work on a cross-stitching project that I started either right before I moved, or shortly thereafter. Unfortunately, cross-stitching isn't one of my favourite crafting activities, but I did manage to finish the picture before I left the hospital the first time.
Additionally, I finished reading a book called The Immortal Life of Henrietta Lacks by Rebecca Skloot. This is a non-fiction book that talks about the story of a black woman whose cancer cells were harvested upon her death and created one of the most important cell lines in existence today. To add a human element to the story, the author goes to great lengths to get in touch with members of Henrietta's family to understand how the use of her cells affected them. It's definitely an interesting read, and really puts forth some interesting questions around ethics and science.
After finishing the cross-stitching project and completing the book, I started reading a few different samples of books on my Kindle. One book I did download and begin reading was The Curious Case of Benjamin Button and Other Tales of the Jazz Age by F. Scott Fitzgerald. I was inclined to download this title for two reasons: 1) I absolutely loved The Great Gatsby; 2) I was interested to see how different the short story was from the film (turns out they are a bit different!). However, I was released shortly after I finished these activities, so I had a bit of a reprieve, and actually ended up finishing this book at home.
Once I arrived home, I tried to take it easy for a few days, but I did manage to make it to a local yarn shop in St. Margaret's called Mrs. Moon's. I had a look at the website, and they had some interesting patterns and yarns, so I figured I'd take a short walk to see if I could pick up something to work on while I was recovering at home. I ended up selecting a pattern for a short-sleeved cardigan and bought a nice jewel-toned blue-green yarn for knitting. Unfortunately, I only had a few days at home to start this project. Turns out it is not worth knitting when you're feeling ill/tired and not completely with it. I ended up starting this particular cardigan four times before I got the counts of the stitches correct! Luckily, I managed to sort it out in the end, and I've nearly completed the cardigan since I began this second visit.
The other thing I've been doing this visit is more reading. This time I've completed a book called The Help by Kathryn Stockett. This is probably one of my favourite books since reading the Millenium Triology by Stieg Larsson when I first got my Kindle earlier this year. The Help is written from the perspectives of two black maids and a white woman in Jackson, Mississippi in the 1960s. The black women work as maids for friends of the white woman. The white woman aspires to be a writer, and manages to talk the black women into working with her to write a memoir about their lives as maids in The South. Not only are the stories that the black women have to tell interesting, but the everyday things that all these ladies face putting this memoir together give the book an edge-of-your-seat feeling at times (you have to keep in mind this is the same period Kennedy was shot and Martin Luther King, Jr. gave his famous "I Have a Dream" speech).
Now I need to start thinking about something else to do. I've downloaded and read a few more samples on my Kindle. One includes a book on project management, and another on some subject matter relating to an MBA. Neither have seemed interesting and worth downloading the full version. I have a few fiction book samples to look through that I downloaded based on recommendation from an article in the New York Times which includes titles Parisians by Graham Robb, Solar by Ian McEwan and Mr. Peanut by Adam Ross.
Ideally, if my concentration and focus were better, I wouldn't mind actually doing a bit of work. Unfortunately, I do not think I am getting quite enough calories in the day, or I'm still adjusting to my calorie intake, and it makes it difficult for me to focus on certain topics for work. I did manage to publish a report earlier this week, so I haven't been completely useless. :-)
In addition to my "extracurricular" activities, each day I get visits from the ward doctor and the dietitian. This visit I even got a visit from some surgeons to discuss options for the future.
In the meantime, I'm left to wait. We have to see if the Modulen diet is going to do the trick to help me gain weight, and if it doesn't we need to look more seriously into the total parenteral nutrition (TPN). The ward doctor indicated yesterday that the Modulen diet is more likely to be effective at helping me gain weight than the TPN, and it would also mean that I wouldn't have to be trapped in hospital until I've gained enough weight to determine next steps. So please keep your fingers crossed for me the Modulen does the trick!
30 June 2011
The Liquid Diet - Modulen Day 1
One of the main treatments I was prescribed during my first admission to hospital was a liquid diet. This diet was prescribed to give my gut rest and let it heal while the Humira and prednisolone did their job.
In terms of the diet, it was mainly to consist of some drinks called Fortisip Compact. These little drinks are only 125mL, and packed with 300 calories. In order to get the calories I needed for the day, I was told to drink five of these in hopes that it would provide me with enough calories to gain some weight.
These drinks went down pretty well at first. The hospital had mostly one flavour, strawberry, but sometimes I would get lucky and get a vanilla one as well. In addition to the Fortisips, I was drinking lots of water and having some clear broths and other liquids, which helped me keep my sanity to a degree.
After my return visit to the hospital, and after feeling quite ill this past Sunday night, the dietitian suggested switching the main calorie component of my liquid diet. So yesterday I started on what is called the Modulen diet. This drink is a bit different in that it comes in a powder which you have to measure out and mix with water. Not unlike the Fortisip, it comes in a few different flavours. So far I've only tried three: 1) neutral; 2) chocolate and; 3) strawberry.
While the drinks themselves aren't necessarily any more palatable, they are much easier to drink, and I think after almost two weeks of strawberry Fortisip, I'm happy to have a change of flavours. Not only that, but I think the drinks generally settle better in my stomach. After having one, I don't feel like I'm going to explode, and they generally don't seem to cause much, if any, distress on my digestive system.
The other thing that is kind of neat about the Modulen is that there is more flexibility in how you take it than there was for the preprepared Fortisip. I can mix it and drink it normally, or I can freeze it to make ice lollies, or if I fancy a hot beverage, I can warm it up (which I think might be nice with the chocolate and coffee flavours).
The only downside to the Modulen diet is that to get the most out of it, one is really only supposed to drink the Modulen drinks and water, nothing else. I'm not completely convinced I have the will to do this one, especially for several weeks, but if it adequately relieves my symptoms, I may stick with it.
So day one on Modulen is down, only several more weeks to go. Let's see how I manage...
In terms of the diet, it was mainly to consist of some drinks called Fortisip Compact. These little drinks are only 125mL, and packed with 300 calories. In order to get the calories I needed for the day, I was told to drink five of these in hopes that it would provide me with enough calories to gain some weight.
These drinks went down pretty well at first. The hospital had mostly one flavour, strawberry, but sometimes I would get lucky and get a vanilla one as well. In addition to the Fortisips, I was drinking lots of water and having some clear broths and other liquids, which helped me keep my sanity to a degree.
After my return visit to the hospital, and after feeling quite ill this past Sunday night, the dietitian suggested switching the main calorie component of my liquid diet. So yesterday I started on what is called the Modulen diet. This drink is a bit different in that it comes in a powder which you have to measure out and mix with water. Not unlike the Fortisip, it comes in a few different flavours. So far I've only tried three: 1) neutral; 2) chocolate and; 3) strawberry.
While the drinks themselves aren't necessarily any more palatable, they are much easier to drink, and I think after almost two weeks of strawberry Fortisip, I'm happy to have a change of flavours. Not only that, but I think the drinks generally settle better in my stomach. After having one, I don't feel like I'm going to explode, and they generally don't seem to cause much, if any, distress on my digestive system.
The other thing that is kind of neat about the Modulen is that there is more flexibility in how you take it than there was for the preprepared Fortisip. I can mix it and drink it normally, or I can freeze it to make ice lollies, or if I fancy a hot beverage, I can warm it up (which I think might be nice with the chocolate and coffee flavours).
The only downside to the Modulen diet is that to get the most out of it, one is really only supposed to drink the Modulen drinks and water, nothing else. I'm not completely convinced I have the will to do this one, especially for several weeks, but if it adequately relieves my symptoms, I may stick with it.
So day one on Modulen is down, only several more weeks to go. Let's see how I manage...
29 June 2011
When Crohn's Takes Over
I would say that most people who know me, wouldn't necessarily know that I have a condition like Crohn's disease. And of those who do know, I think it would shock most of them to learn how ill I've been over the past few months. It's not that I hide it like some dirty little secret, but it's one of those things that I generally do not allow to define who I am as a person. Unfortunately, I've been so ill lately, I feel like Crohn's is taking over my life, and defining who I am as a person.
I first starting having problems with my current flare at the end of 2008, just in time to meet my boyfriend's family at Christmas. Luckily, the only real symptom I was having at the time was pain, and none of the other less pleasant symptoms like diarrhoea and vomiting. Once we returned from our trip, I scheduled an appointment with a local gastroenterologist (GI) who did a few blood tests and said that my inflammatory markers in my blood tests indicated I was having a mild flare. She prescribed me an immunosuppressant and said if I had any other issues to return. Luckily, that seemed to do the trick, and I didn't have too many troubles for a few months.
Then in June 2009, two days before I was due to set off to Paris to meet up with my boyfriend, and later to London to scope out neighbourhoods for my upcoming move, I drove myself to the ER at Stanford hospital. I was having some of the most intense abdominal pain I've experienced with my disease, and there was no way I was in any shape to leave the country. Turned out I had a small bowel obstruction caused by inflammation in my intestines. I was treated with IV steroids for a week in the hospital, and left with a course of them to continue at home.
All seemed to be well until the symptoms came back a month later. Luckily, my boyfriend was actually home this time (he was already in Europe for work, and then visiting his family in the UK the first time I got sick). Again, I had another small bowel obstruction. One of the GIs I saw in hospital asked why I thought I was back so soon, and all I could think of was that the steroid taper was too quick. When I was ill as a child, I always remembered doing very long tapers off the steroids after a flare, and this was the first time I was told to go from 40mg of the prednisone down to 0mg in a month. The doctors must have thought my reasoning was sound because I again left the hospital with a high-dose of steroids, and a tapering plan that allowed me to taper by only 10mg per month.
Additionally, my regular GI started me on one of the biologic drugs on the market, called Humira. It's generally only used to treat very severe Crohn's disease, but as I was told in the hospital the first time, I would be luckily if I didn't end up needing surgery within the next year (one of the hospital GIs and surgeons apparently bet a steak dinner on it). I was willing to try the Humira in hopes that it would allow me to avoid surgery for a few more years. Unfortunately, life and moving kind of got in the way, and I had to discontinue the Humira once I moved to the UK (read about that here).
I managed OK the first few months I was in the UK. I had ordered Humira on a three-month prescription before I moved from the US, so I had enough to get me through to December, and I had another three month's worth of prednisone, prescribed at 40mg per day to last me through the same period. I managed to get off the steroids by Christmas, and enjoyed a good few months until I started showing symptoms again in the spring of 2010, which was about the same time I managed to sort myself out and get registered with a GP. Unfortunately, I learned some disappointing news at that appointment about getting referrals to specialists in the UK as a foreigner (see link above), and ended up leaving only with a prescription for the immunosuppressant I had been taking.
Fast forward a few months to February 2011. I finally had my first appointment with a GI in the UK. The biggest problem seeing a new doctor is trying to get them up to speed on your condition. My last GI in California only had tests from the hospital to go on for my treatment (as well as my word about my diagnosis), and my current GI only had the medical records on the CD I supplied him from my time in California. This meant that I would have to go through a few extra tests in order for him to properly assess the severity of my Crohn's and figure out what would be the best treatment plan.
One thing we found early on was that the immunosuppressant that I had been prescribed in California was probably doing me more harm than good. One possible side effect the drug has is to elevate certain liver enzyme levels which can lead to things like liver disease. My liver enzymes were crazy, and after a month of regular blood tests, I was advised to stop the medicine. I wasn't for three months after I stopped the medicine that my liver enzyme levels returned to normal, and I suspect that this contributed to at least one of the visits I made to the A&E in the past year (where I was aptly accused of being a drunk!).
Another thing we found out after an MRI of my small bowel is that I have "significant small bowel disease," as the GI described it. Turns out I have a seven to eight centimetre section of my small intestine that is significantly narrowed. This is starting to explain the increase in symptoms I had been having in the recent months including increased pain/discomfort, bloating/gas and weight loss.
By the time April rolled around, the severity of my disease was making itself known. I ended up going to A&E twice with symptoms similar to those I had when I had the small bowel obstructions in 2009. Luckily, I was not actually obstructed, but I didn't really get any useful help or advice from the doctors, either.
Then in May, I took a trip home. I was starting to feel a bit rubbish the week before the trip, but I figured it was because I had a lot of things going on that week. I took my practical driving test for my UK license (which I passed with absolutely no faults), and was making preparations for the trip to America. Unfortunately, things didn't improve when I got to the States. I felt a bit better the first day or so, but things ended up getting worse, and by the end of the first of the two-week trip, I made the decision to come back to the UK early. Not only did I decide to get home early, but before I left, I emailed my GI to let him know what was going on with me to see what advice he could offer in the interim and upon my arrival back in the UK. Too bad he was out of office until I already arrived in the UK...at least he was able to offer me some initial advice on what I could do to relieve my symptoms, and offered me an appointment to see him in clinic the following week.
In the time leading up to the appointment, I had gotten progressively worse. I would have only a few nights were I was able to actually sleep through the night without getting up to be sick, and the very night before the appointment was horrible. I was so sick and dehydrated that I barely could walk to the GP earlier in the day to sort out a prescription for potassium, and then had to hire a taxi to come to the appointment at the hospital. The GI had mentioned hospital admission as a possibility in the email exchanges we had prior to the appointment, and when we chatted that day, it was easy for me to agree to come back the following day to be admitted to hospital.
The problem wasn't just that I was feeling so poorly, but also that I had managed to lose 10kg in just two months, amounting to about 20 percent of my body weight. The plan for the hospital admission was to get a few more tests in to assess how bad the disease was getting in my intestines, determine whether I needed surgery, and also come up with a plan to get some weight on me.
Initially, the surgeons decided that surgery was not necessary. They were happy to let the doctors go on with their treatment plan (steroids and Humira) to see if it was inflammation causing the problem. In addition to the medicines, I had been prescribed a liquid diet consisting of some drinks called Fortisip Compact. This was to allow my bowels to rest whilst giving me the number of calories I required to gain some weight. While they are not the most palatable drinks, I figured I could give it a go.
Unfortunately, within two days of being released from hospital, I was having trouble with my stomach bloating and feeling really uncomfortable. I found myself quite sick the night after I was let out, and then again two nights later. I decided I needed to get back to hospital since I obviously was having some trouble if I couldn't even keep a liquid diet down (and I was sticking to it pretty well, I might add!).
So I've been back in hospital since 20 June. The treatment plan is largely the same, but surgery is becoming a more likely possibility. In fact, I was told it is not a matter of if any more, but when I will need to have surgery. Luckily, this option does not bother me. In fact, I kind of like the idea of getting the problem fixed somewhat permanently and getting on with life (including getting back to normal food!). However, I am not even healthy enough for surgery at this point. The weight loss is the main problem, but also the high-dose of steroids makes me too vulnerable for surgery, except in an emergency situation.
So now I am stuck in hospital trying to figure out which liquid diet will work best. Today the dietitian came round to start me on one called the Modulen IBD diet. She thought I may have an easier time with the Modulen because it is thinner in consistency than the Fortisip. So far, it seems OK, but it still is not the most palatable of drinks I've had.
Additionally, the doctors are considering placing a central line IV and feeding me through that, something called total parenteral nutrition (TPN). I had TPN leading up to both my surgeries in 1994 and 1999, and it was highly effective at helping me gain weight. However, what was most useful at getting me to gain weight was removing the diseased bowel, allowing me to eat normally again.
Now I am waiting for word from the doctors on the next steps. I suppose if I can get on with the Modulen diet, the doctors will let me go home on that for a few weeks, and follow-up with me in clinic. Otherwise, I will remain in hospital getting the TPN and waiting until I've gained enough weight to see where we go from here. This should be interesting...
I first starting having problems with my current flare at the end of 2008, just in time to meet my boyfriend's family at Christmas. Luckily, the only real symptom I was having at the time was pain, and none of the other less pleasant symptoms like diarrhoea and vomiting. Once we returned from our trip, I scheduled an appointment with a local gastroenterologist (GI) who did a few blood tests and said that my inflammatory markers in my blood tests indicated I was having a mild flare. She prescribed me an immunosuppressant and said if I had any other issues to return. Luckily, that seemed to do the trick, and I didn't have too many troubles for a few months.
Then in June 2009, two days before I was due to set off to Paris to meet up with my boyfriend, and later to London to scope out neighbourhoods for my upcoming move, I drove myself to the ER at Stanford hospital. I was having some of the most intense abdominal pain I've experienced with my disease, and there was no way I was in any shape to leave the country. Turned out I had a small bowel obstruction caused by inflammation in my intestines. I was treated with IV steroids for a week in the hospital, and left with a course of them to continue at home.
All seemed to be well until the symptoms came back a month later. Luckily, my boyfriend was actually home this time (he was already in Europe for work, and then visiting his family in the UK the first time I got sick). Again, I had another small bowel obstruction. One of the GIs I saw in hospital asked why I thought I was back so soon, and all I could think of was that the steroid taper was too quick. When I was ill as a child, I always remembered doing very long tapers off the steroids after a flare, and this was the first time I was told to go from 40mg of the prednisone down to 0mg in a month. The doctors must have thought my reasoning was sound because I again left the hospital with a high-dose of steroids, and a tapering plan that allowed me to taper by only 10mg per month.
Additionally, my regular GI started me on one of the biologic drugs on the market, called Humira. It's generally only used to treat very severe Crohn's disease, but as I was told in the hospital the first time, I would be luckily if I didn't end up needing surgery within the next year (one of the hospital GIs and surgeons apparently bet a steak dinner on it). I was willing to try the Humira in hopes that it would allow me to avoid surgery for a few more years. Unfortunately, life and moving kind of got in the way, and I had to discontinue the Humira once I moved to the UK (read about that here).
I managed OK the first few months I was in the UK. I had ordered Humira on a three-month prescription before I moved from the US, so I had enough to get me through to December, and I had another three month's worth of prednisone, prescribed at 40mg per day to last me through the same period. I managed to get off the steroids by Christmas, and enjoyed a good few months until I started showing symptoms again in the spring of 2010, which was about the same time I managed to sort myself out and get registered with a GP. Unfortunately, I learned some disappointing news at that appointment about getting referrals to specialists in the UK as a foreigner (see link above), and ended up leaving only with a prescription for the immunosuppressant I had been taking.
Fast forward a few months to February 2011. I finally had my first appointment with a GI in the UK. The biggest problem seeing a new doctor is trying to get them up to speed on your condition. My last GI in California only had tests from the hospital to go on for my treatment (as well as my word about my diagnosis), and my current GI only had the medical records on the CD I supplied him from my time in California. This meant that I would have to go through a few extra tests in order for him to properly assess the severity of my Crohn's and figure out what would be the best treatment plan.
One thing we found early on was that the immunosuppressant that I had been prescribed in California was probably doing me more harm than good. One possible side effect the drug has is to elevate certain liver enzyme levels which can lead to things like liver disease. My liver enzymes were crazy, and after a month of regular blood tests, I was advised to stop the medicine. I wasn't for three months after I stopped the medicine that my liver enzyme levels returned to normal, and I suspect that this contributed to at least one of the visits I made to the A&E in the past year (where I was aptly accused of being a drunk!).
Another thing we found out after an MRI of my small bowel is that I have "significant small bowel disease," as the GI described it. Turns out I have a seven to eight centimetre section of my small intestine that is significantly narrowed. This is starting to explain the increase in symptoms I had been having in the recent months including increased pain/discomfort, bloating/gas and weight loss.
By the time April rolled around, the severity of my disease was making itself known. I ended up going to A&E twice with symptoms similar to those I had when I had the small bowel obstructions in 2009. Luckily, I was not actually obstructed, but I didn't really get any useful help or advice from the doctors, either.
Then in May, I took a trip home. I was starting to feel a bit rubbish the week before the trip, but I figured it was because I had a lot of things going on that week. I took my practical driving test for my UK license (which I passed with absolutely no faults), and was making preparations for the trip to America. Unfortunately, things didn't improve when I got to the States. I felt a bit better the first day or so, but things ended up getting worse, and by the end of the first of the two-week trip, I made the decision to come back to the UK early. Not only did I decide to get home early, but before I left, I emailed my GI to let him know what was going on with me to see what advice he could offer in the interim and upon my arrival back in the UK. Too bad he was out of office until I already arrived in the UK...at least he was able to offer me some initial advice on what I could do to relieve my symptoms, and offered me an appointment to see him in clinic the following week.
In the time leading up to the appointment, I had gotten progressively worse. I would have only a few nights were I was able to actually sleep through the night without getting up to be sick, and the very night before the appointment was horrible. I was so sick and dehydrated that I barely could walk to the GP earlier in the day to sort out a prescription for potassium, and then had to hire a taxi to come to the appointment at the hospital. The GI had mentioned hospital admission as a possibility in the email exchanges we had prior to the appointment, and when we chatted that day, it was easy for me to agree to come back the following day to be admitted to hospital.
The problem wasn't just that I was feeling so poorly, but also that I had managed to lose 10kg in just two months, amounting to about 20 percent of my body weight. The plan for the hospital admission was to get a few more tests in to assess how bad the disease was getting in my intestines, determine whether I needed surgery, and also come up with a plan to get some weight on me.
Initially, the surgeons decided that surgery was not necessary. They were happy to let the doctors go on with their treatment plan (steroids and Humira) to see if it was inflammation causing the problem. In addition to the medicines, I had been prescribed a liquid diet consisting of some drinks called Fortisip Compact. This was to allow my bowels to rest whilst giving me the number of calories I required to gain some weight. While they are not the most palatable drinks, I figured I could give it a go.
Unfortunately, within two days of being released from hospital, I was having trouble with my stomach bloating and feeling really uncomfortable. I found myself quite sick the night after I was let out, and then again two nights later. I decided I needed to get back to hospital since I obviously was having some trouble if I couldn't even keep a liquid diet down (and I was sticking to it pretty well, I might add!).
So I've been back in hospital since 20 June. The treatment plan is largely the same, but surgery is becoming a more likely possibility. In fact, I was told it is not a matter of if any more, but when I will need to have surgery. Luckily, this option does not bother me. In fact, I kind of like the idea of getting the problem fixed somewhat permanently and getting on with life (including getting back to normal food!). However, I am not even healthy enough for surgery at this point. The weight loss is the main problem, but also the high-dose of steroids makes me too vulnerable for surgery, except in an emergency situation.
So now I am stuck in hospital trying to figure out which liquid diet will work best. Today the dietitian came round to start me on one called the Modulen IBD diet. She thought I may have an easier time with the Modulen because it is thinner in consistency than the Fortisip. So far, it seems OK, but it still is not the most palatable of drinks I've had.
Additionally, the doctors are considering placing a central line IV and feeding me through that, something called total parenteral nutrition (TPN). I had TPN leading up to both my surgeries in 1994 and 1999, and it was highly effective at helping me gain weight. However, what was most useful at getting me to gain weight was removing the diseased bowel, allowing me to eat normally again.
Now I am waiting for word from the doctors on the next steps. I suppose if I can get on with the Modulen diet, the doctors will let me go home on that for a few weeks, and follow-up with me in clinic. Otherwise, I will remain in hospital getting the TPN and waiting until I've gained enough weight to see where we go from here. This should be interesting...
14 June 2011
Socialised Medicine Isn't That Bad After All
Almost a year ago, I logged a post about my frustrations with the NHS. This boiled down to two things:
Luckily, my gut held out pretty well for the first year I lived in the UK. After a visit to my surgery last spring, I was able to get the GP to prescribe the immuno-suppressant I had been taking since I first got my Crohn's treated in California. Between that and the occasional short-course of steroids, things were looking pretty good. Then in October, I ended up in the A&E with severe abdominal pain reminiscent of that I had experienced during the two small bowel obstructions I had before moving here. I didn't have another small bowel obstruction, but I was accused of being a drunk because the immuno-suppressant was causing some liver enzyme levels to look a bit crazy. Charming.
I was back to my GP right before Christmas because things were starting to get worse, and I figured by this time, I had finally fulfilled my 365 day residency requirement. Unfortunately, the GP was pretty useless at first. They were happy to finally refer me to a gastro consultant, but they were unwilling to prescribe me any steroids or other treatments to help me get through the pain. Luckily, my tummy settled down enough for me to enjoy Christmas with my finance and his family, but as soon as I was back to London, I was back to the surgery to get some help. The second time I saw a different doctor (my surgery does not seem to have any permanent staff), and he was nice enough to really chase up on the referral and actually prescribed me a dose of steroids to take until I had a chance to see the consultant. It still took a bit of chasing up and waiting to get the appointment with the consultant, but I managed until I had the appointment in February.
The consultant has been fabulous. While going through loads of tests isn't necessarily the most fun in the world, we have the most complete and updated assessment of my disease. From this, he was able to determine that I actually am battling quite a severe case of Crohn's and he petitioned the local primary care trust on my behalf to get me back on the the Humira injections that I had started before I left the US. Not only that, but he's tech-savvy and is easily reachable by email, which is great when you just have a quick question or need some advice.
What I think I appreciate the most, however, is the fact that I don't have to worry about paying a penny for the visits to clinic, the myriad tests I've had done and even for some of the specialised treatments I've been prescribed. Not only that, but I have a very understanding employer and was told to take the time I need to recover, which has been useful lately since I've been in hospital for the past six days.
I guess patience is the key here. Now to put that patience to work with my current treatment plan...
- despite paying taxes like other UK residents, I was not entitled to full NHS coverage until I lived here for a year
- once I was eligible for full health coverage, there was no guarantee that I would be able to get the best treatment available for my Crohn's disease
Luckily, my gut held out pretty well for the first year I lived in the UK. After a visit to my surgery last spring, I was able to get the GP to prescribe the immuno-suppressant I had been taking since I first got my Crohn's treated in California. Between that and the occasional short-course of steroids, things were looking pretty good. Then in October, I ended up in the A&E with severe abdominal pain reminiscent of that I had experienced during the two small bowel obstructions I had before moving here. I didn't have another small bowel obstruction, but I was accused of being a drunk because the immuno-suppressant was causing some liver enzyme levels to look a bit crazy. Charming.
I was back to my GP right before Christmas because things were starting to get worse, and I figured by this time, I had finally fulfilled my 365 day residency requirement. Unfortunately, the GP was pretty useless at first. They were happy to finally refer me to a gastro consultant, but they were unwilling to prescribe me any steroids or other treatments to help me get through the pain. Luckily, my tummy settled down enough for me to enjoy Christmas with my finance and his family, but as soon as I was back to London, I was back to the surgery to get some help. The second time I saw a different doctor (my surgery does not seem to have any permanent staff), and he was nice enough to really chase up on the referral and actually prescribed me a dose of steroids to take until I had a chance to see the consultant. It still took a bit of chasing up and waiting to get the appointment with the consultant, but I managed until I had the appointment in February.
The consultant has been fabulous. While going through loads of tests isn't necessarily the most fun in the world, we have the most complete and updated assessment of my disease. From this, he was able to determine that I actually am battling quite a severe case of Crohn's and he petitioned the local primary care trust on my behalf to get me back on the the Humira injections that I had started before I left the US. Not only that, but he's tech-savvy and is easily reachable by email, which is great when you just have a quick question or need some advice.
What I think I appreciate the most, however, is the fact that I don't have to worry about paying a penny for the visits to clinic, the myriad tests I've had done and even for some of the specialised treatments I've been prescribed. Not only that, but I have a very understanding employer and was told to take the time I need to recover, which has been useful lately since I've been in hospital for the past six days.
I guess patience is the key here. Now to put that patience to work with my current treatment plan...
28 July 2010
Socialised Medicine
The healthcare reform issue was really heating up as a left the US last autumn. I agree that the US healthcare system desperately needed reform. However, I do not necessarily agree with some of the ideas that were on the table (i.e. a completely socialised system like the NHS), and I'm not too sure how I feel about the healthcare reform end state.
What I envisaged was a system that would make access much easier for the unemployed and poor people (a public option), and make it easier (i.e. cheaper) for the rest of us to "top-up" our insurance if we wanted better coverage than what our employer's plans offered. Instead, the US is stuck with some strange system that will fine individuals $95, or up to 1 percent of income for those earning less than $9500, a year beginning 2014 if they do not secure health insurance coverage. How the hell does that make sense? And how the hell is the Government going to enforce this?
I certainly don't like the idea of completely socialised medicine. So what's my beef with the NHS?
I have Crohn's disease. It's a disease that causes scar tissue to build up on the insides of my intestines which causes pain, discomfort and some other unpleasant symptoms (I'll let you look those up on the interwebs yourself). If severe enough, it necessitates hospital visits and potentially surgery.
Before moving to the UK, I had two nasty small bowel obstructions which caused me to stay in the hospital for nearly a week at a time. Despite these episodes, I decided I would still move to the UK as it's a Western country with modern medicine and relatively easy access to healthcare. Turns out, a socialised system has at least as much, if not more, red tape than the screwed up system in the US.
I eventually managed to register for the NHS. The reason it took me nearly six months was due mostly to my own laziness. Once I registered, I scheduled an appointment with my GP. I was hoping the GP would be able to get me in touch with a gastroenterologist and help me get refills for some of the medicines I had been prescribed after my last stint in the hospital.
During my visit with the GP, I found out if you're a foreigner like me, you have to wait a year before you are allowed to see a specialist. That meant I wouldn't be allowed to see someone experienced in treating Crohn's until I had lived in the UK for another six months unless there was some sort of emergency that required a visit to the hospital. So despite paying my share of taxes like UK citizens and other residents legally allowed to work in the country, I wasn't entitled to the same level of treatment. How is that fair?
To top it off, the GP was frank: the UK doesn't believe in proactive treatment. So instead of treating my Crohn's to keep me from needing surgery in the immediate future, they would much prefer to keep it a ticking time bomb. This meant that one of the main medicines I was prescribed in the US wasn't available to me here. Awesome.
The thing about socialised medicine is that there are mounds of red tape to fight through. Cutting-edge medicines will never be available to the average person living here. And private insurance here is pretty useless as it doesn't cover pre-existing conditions. Because I was insured through my employer when I was in the US, I didn't have to worry about my pre-existing condition. Not only was I happy to pay to ensure I had access to my employers best insurance plan, I was happy to pay whatever co-pay my insurer required for medicines. I knew the co-pays meant I had access to the best medicines that could treat my disease.That simply isn't an option in the UK unless I am willing to pay full price, which I simply cannot afford.
So America, consider yourself lucky. Your system might be screwed up, but at least you have some level of choice.
What I envisaged was a system that would make access much easier for the unemployed and poor people (a public option), and make it easier (i.e. cheaper) for the rest of us to "top-up" our insurance if we wanted better coverage than what our employer's plans offered. Instead, the US is stuck with some strange system that will fine individuals $95, or up to 1 percent of income for those earning less than $9500, a year beginning 2014 if they do not secure health insurance coverage. How the hell does that make sense? And how the hell is the Government going to enforce this?
I certainly don't like the idea of completely socialised medicine. So what's my beef with the NHS?
I have Crohn's disease. It's a disease that causes scar tissue to build up on the insides of my intestines which causes pain, discomfort and some other unpleasant symptoms (I'll let you look those up on the interwebs yourself). If severe enough, it necessitates hospital visits and potentially surgery.
Before moving to the UK, I had two nasty small bowel obstructions which caused me to stay in the hospital for nearly a week at a time. Despite these episodes, I decided I would still move to the UK as it's a Western country with modern medicine and relatively easy access to healthcare. Turns out, a socialised system has at least as much, if not more, red tape than the screwed up system in the US.
I eventually managed to register for the NHS. The reason it took me nearly six months was due mostly to my own laziness. Once I registered, I scheduled an appointment with my GP. I was hoping the GP would be able to get me in touch with a gastroenterologist and help me get refills for some of the medicines I had been prescribed after my last stint in the hospital.
During my visit with the GP, I found out if you're a foreigner like me, you have to wait a year before you are allowed to see a specialist. That meant I wouldn't be allowed to see someone experienced in treating Crohn's until I had lived in the UK for another six months unless there was some sort of emergency that required a visit to the hospital. So despite paying my share of taxes like UK citizens and other residents legally allowed to work in the country, I wasn't entitled to the same level of treatment. How is that fair?
To top it off, the GP was frank: the UK doesn't believe in proactive treatment. So instead of treating my Crohn's to keep me from needing surgery in the immediate future, they would much prefer to keep it a ticking time bomb. This meant that one of the main medicines I was prescribed in the US wasn't available to me here. Awesome.
The thing about socialised medicine is that there are mounds of red tape to fight through. Cutting-edge medicines will never be available to the average person living here. And private insurance here is pretty useless as it doesn't cover pre-existing conditions. Because I was insured through my employer when I was in the US, I didn't have to worry about my pre-existing condition. Not only was I happy to pay to ensure I had access to my employers best insurance plan, I was happy to pay whatever co-pay my insurer required for medicines. I knew the co-pays meant I had access to the best medicines that could treat my disease.That simply isn't an option in the UK unless I am willing to pay full price, which I simply cannot afford.
So America, consider yourself lucky. Your system might be screwed up, but at least you have some level of choice.
Subscribe to:
Posts (Atom)