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!


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…

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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…

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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:

  1. despite paying taxes like other UK residents, I was not entitled to full NHS coverage until I lived here for a year
  2. 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…

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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.

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