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…