An Anniversary

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.

Coffee Crisis 2012

It's like the Exxon Valdez... a coffee spill in my kitchen.

After living in the UK for nearly three years, I've finally managed to re-establish my hardcore coffee addiction.

In Britain, coffee usually comes in instant form, and as one might imagine, it's not the tastiest. Because tea is a much more popular hot beverage in Britain, most people don't have coffee makers, instead opting for electric kettles. As such, kettles are considerably less expensive and easier to find than coffee makers, so that is what I went for when I moved here. It was difficult enough getting my flat set up without a car, and I really had to pinch pennies after the move, so I was not prepared to hunt for a coffee maker.

Fast forward to today. I've recently gotten into Twitter, and after following my local council, I discovered a coffee place called Astrora Coffee in nearby Teddington. At first, I thought they may be another coffee shop flogging coffee beverages, but it turns out that they don't sell coffee beverages at all--they only sell coffee beans and coffee making accessories. Not wanting to completely waste my trip (and miss out on delicious coffee at home), I decided to buy a pour-over coffee funnel, paper filters and some coffee beans. I excitedly took my new purchases home, and instantly rekindled my love for black coffee.

Pour-over coffee really isn't that much different from a drip-coffee maker one may have in their kitchen in America. Instead of relying on the coffee maker to do all the work, I have to boil the water separately and subsequently pour it over the ground which I have set up in the funnel. The beauty of this process is that it can be done quite easily for a single cup, and it's quick. The downside, as the picture shows, is that it's possible for the coffee to overflow if your cup is smaller than expected. I realise a french press would eliminate this issue, but I really don't like the oiliness of the coffee associated with the method.

After much success with my first 250 grams of ground coffee, I went back to the shop and bought a hand coffee grinder, another 250 grams of whole bean Tanzania, and 125 grams of decaf Guatemala. The hand grinder has turned out to be quite a bit of work, but totally worth it. I'm so happy to be reunited with my favouritest beverage ever.

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:

1. Weddings are expensive (though we realised this earlier)
2. Three months is not much time to plan a wedding
3. 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.

Baking

Since I've been back home, my boyfriend and I have been doing a fair amount of baking. In the first two weeks, he made a batch of chocolate chip cookies each weekend. Then the weekend before last, we stopped at my favourite bakery, Outsider Tart, for some delicious baked treats (and amazing coffee). The guys that run the shop recently released a bakery book, Baked in America, which has all sorts of delicious recipes for some of the items they sell in their shop, including, but not limited to, brownies and bars, cookies, muffins and whoopie pies.

I let my boyfriend choose the first recipe as they all looked delicious to me, and I accidentally ate most of the chocolate chip cookies when he made them. He chose the recipe for the Hepburns. There was no picture for this recipe, only an introduction and the recipe itself, so I wasn't exactly sure what to expect. It turns out that these so-called Hepburns are the best tasting brownies I've ever had the pleasure of eating. Seriously. We managed to bake them just to the point where the knife came out clean when the brownies were tested, which left us with a perfectly gooey brownie.

The delicious result of the Hepburn brownie recipe from Outsider Tart's Baked in America.

Baked in America has turned out to be a great purchase. In addition to the Hepburns, I've made some delicious ginger muffins (though I'm not convinced they turned out quite right) and chocolate snickerdoodles. What makes this bakery book great, however, isn't just the amazing recipes, but the fact that it is accessible to any would-be baker, not just American bakers, nor British bakers. In America, we tend to measure things by volume: one cup, two cups, etc. Whereas in most the rest of the world, things are measured by weight (grams, kilograms, etc.). This bakery book includes measurements in both traditional American measurements as well as weight (including both imperial and metric measurements).

I've been trying the weight-method of baking since I've gotten this book. This is mostly because British butter is not sold in easy-to-use sticks as it is in America, so I'm often left to measure that by weight anyway. Even though I'm most familiar with the American way of baking, I'm actually finding baking by weight enjoyable. The best part is that I can tare the scale after the addition of each ingredient, and am actually getting fewer things dirty as a result.

With all the baked goods that have been made in the past week, it's no surprise that I've managed to gain another three pounds in 10 days. The weight gain seems to have slowed down a bit, but I think that's a result of a combination of getting out more and getting closer to my target weight. I've only got another 4.5 kilograms to get back to 50 kilograms, but I'd be happy just to reach 105 pounds again--that tends to be the lower range of my normal weight, and probably the weight I was when I was reasonably healthy here in London.

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.

Me at nearly 45kg

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!

Fun with Stereotypes

The following excerpts were recently posted as part of a web-comic, Minor Differences, Part 4 by The Oatmeal. This is one of my favourite web-comics, and I highly recommend checking out a few of his others, namely The Bobcats and The Pterodactyl. However, if you are sensitive to "naughty" language, or have you have absolutely no sense of humour, they may best be avoided.

Courtesy of The Oatmeal, Minor Differences, Part 4

Courtesy of The Oatmeal, Minor Differences, Part 4

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.

Nothing Like a Shower to Make You Feel Better

If you ask me, my recovery is going brilliantly. I didn't wake up in excruciating pain in the wee hours of the morning the past two days, and really didn't have any pain when I woke up this morning. In fact, I discovered I can now lie on my sides and get myself out of a flat bed. Win.

Yesterday, I treated myself to a proper shower--the first one I've had since the Hickman line was placed over six weeks ago. The good thing about being on a surgical ward is that they have all kinds of different wound dressings, and managed to hook me up with a waterproof one for my incision, so I figured I'd ask for one for my Hickman line as well. I have to say, that shower felt pretty awesome.

Yesterday was also the first day I started eating normally. I was still a bit feeling a bit apprehensive/cautious, and wasn't actually feeling all that hungry either. Regardless, I managed a bowl of Rice Krispies for breakfast, 1/2 a chicken mayo sandwich (which required 10 minutes of picking off sweet corn before I could eat), 3/4 of a Build-Up soup and a Fortisip for lunch, and a chicken breast, potatoes and a Fortijuce for dinner. So not necessarily a load of food, but more than I've eaten in a long while, and with the supplements, I still managed a fair number of calories too.

I'm happy to report that what I managed yesterday settled in my digestive system with little issue. Not only that but things seems to be functioning in a relatively normal way. I think it will take a week or two for my digestive tract to remember how to process normal amounts of food, but so far I can manage things. I'm just stoked that I managed to eat a bit of meat without hurling!

I think the best thing, however, is that I am getting my hunger back. The first few days after surgery, I think the pain from the surgery was overriding my hunger, but now that I'm mostly pain-free, the hunger is back. I just hope my digestive tract can keep up.

I'm not exactly sure when I'm going to be let out of hospital. The surgical team will probably be happy to let me go tomorrow, but I think the gastro team will want to keep me until at least Tuesday. The PN stopped Friday night, so at least we will have an idea whether I can manage on my own. At the very least, I should be able to get a few days of day-leave, which would be nice now that my dad is here for a few weeks to help me around my flat during the day.

I have to say, I was a bit skeptical that recovery could be so quick given my relatively frail state, but I am quite pleased with things so far, and I cannot wait to go home.

Post-Op, Day 3

I'm in my third day of recovery following my surgery Wednesday. Things are progressing quite nicely.

Yesterday was probably the toughest day so far, though I think the day after usually is the worst. Things were quite sore, and it was difficult to move around. Not only that, but it was difficult to catch a deep breath, or even breathe at all. It's not until you've had you abdomen ripped open that you realise how important some of those muscles are to things like breathing and just supporting yourself.

Other than the soreness, things were good. The surgeons stopped by in the morning and said the catheter could come out and that I should get out and start walking about. I had to have a nurse help me out of bed the first time. Obviously it was quite painful, but my blood pressure was quite low, so I was feeling a bit woosy. She was very kind and helpful. She got me to my chair and helped me get washed. I started feeling much better once I was sitting upright, and I managed to move about on my own during the day. The surgeons also said I could be on free fluids which meant I could drink whatever I wanted.

Unfortunately, I didn't get a very good night's sleep last night. A new lady was brought into the bay last night and she snores incredibly loudly. She only seems to snore at night, or when she doesn't have an oxygen mask on. So, I managed about five or six hours of sleep. It doesn't help I wake up in a fair amount of pain at 05:30. I had requested some Tramadol for pain a bit earlier, but it is pretty useless for me. Paracetamol has actually been more effective, especially in IV form (though that early morning dose is the only one I get intravenously, the rest of the time I take it in a dissolveable tablet form.) One of the people on the surgical team prescribed another pain killer, so hopefully that will work well.

Surprisingly, I've been on oral drugs since I came out of surgery. It's true that most are in some liquid form or other, so they're easier to absorb in my current state. One is Metronidazole which is administered via an oral syringe and makes me feel like a little kid when I take it. It has a very interesting taste. Hopefully I won't be on it very long.

Today has gone pretty well so far. The surgeon stopped by and said I could work with the dietitian to reintroduce food. So when the dietitian stopped by, I had a chat with her to come up with a plan. For today, we are sticking to liquidy/soft stuff including jelly [jello], Build Up soups, Fortisip and Fortijuce. If I can keep these calories down without pain, then I can try normal food tomorrow. Additionally, I'll be getting my last bag of PN either tonight or tomorrow. Everyone agrees, that is, the dietitians I've talked to, the doctors and the surgeons, that the best way to gain weight is to eat normally.

So far everyone, including the surgeons, doctors, dietitians and myself are quite pleased with my recovery. They changed the dressing on my wound this morning, and it looks like I might have lost my belly button. The surgeon said they tidied up my previous scars, and I think this one will be much nicer. Though I have to say I'm not looking forward to having all the staples removed!

Hopefully if all goes well, I can leave the hospital Monday or Tuesday. Hell, I could be doing a lot worse like the snoring lady who had less-invasive intestinal surgery but I've unfortunately seen be sick twice. I guess she doesn't know how to take it easy! A

Recovering

I had my surgery this morning. Things went well and they only did the strictureplasties, no resecting. I spent a few hours in recovery before being moved to a surgical ward for the rest of my stay.

I'm not in too much pain at the moment, and I'm confident I will have a speedy recovery. Other good things include not having an NG tube and being able to sip water. This already puts me on a faster recovery trajectory than my previous surgeries. I suppose tomorrow they will try to get me out of bed, and we'll move on from there!

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.

I Don't Want to Be Old

Being in St. George's for the past few days has certainly been interesting, and one thing I'm quickly learning is that I need to enjoy my youth while it lasts. Of the six of us ladies in this bay, I am the youngest by at least 35 years, probably 40 (I am 28, by the way). This vast age difference has made me realise that old age isn't necessarily something to look forward to. Sure, you get to retire and do whatever you want, provided your pension is adequately funded for it, but there are also several downsides to growing old.

1. Old people are sick more frequently than young people. This has been proven by the ratio of old-to-young people I have seen in hospital in the past two months. Even when I was in Kingston, I only saw a handful of people under 40 as patients on the ward. I'm sick enough as a 20-something, I'm not looking forward to being sick more frequently in old age. I guess the advantage I have is that old age is still a long way in my future, so maybe there will be some incredible medical advances when time comes.

2. Old people are either lazy or unable to do much for themselves. Sure, it sounds nice to have someone else do a lot of stuff for you, things like cook your meals or clean your house, but I dunno if I could handle having someone wheel me to the toilet or change my adult nappy (diaper).

3. Some old people are just plan crazy. The lady in the bed next to me likes to stay up at night saying, "hello? Hello? Hello?" (she's even doing it as I type this post, and actually woke me out of a sound sleep last night). Then if you make the mistake of needing the toilet when she's doing this, you get stuck trying to explain why you don't want to chat and that it's bedtime. Eventually I gave up and called a nurse for her.

Another lady here also seems a bit crazy, but the more I overhear, the more I think her situation is just overwhelming for her. She's Sri Lankan and was apparently brought to the UK for medical treatment. I don't think she knows her next of kin here all that well, and is coping a little poorly with the situation. She seems nice enough though; I even had a 5 minute chat with her earlier about some of the craft stuff I was working on (which is the most English she's spoken at one time since I've been here).

I'd also say the French lady across from me is a bit crazy because she likes to snack at random hours of the night, but she is kind of entertaining. My knowledge of French is very limited, but I can pick up on a few things when she tries speaking to me, and she seems to have a good sense of humour.

Either some of the perceptions I had of old age were wrong, or being in hospital has scarred my image of old-age. I imagined that when I got older and retired, I spend my time travelling the world, spending time with family and engaging in more of my hobbies like baking and knitting, not lying in a hospital bed waiting for someone to change my nappy.

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.

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.

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.

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.

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:

1. 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!).
2. 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!).
3. 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).
4. 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.

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!).

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:

"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."

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.