Crohn's and Me (First Chapter)

So, after finally deciding that I would tell you about my health problems, here I am, about to share with you my some of my life story. I expect you have guessed by the title already that I suffer from Crohn's disease, which is a disease potentially affecting any part of the digestive tract - from the mouth to the anus (bum). But with a lot of people Crohn's mainly affects the small intestines and sometimes the large intestines too (or small and large bowel). I personally have had Crohn's in every part of my digestive tract, but for the most part of my life since diagnosis, it has mainly affected my small intestine.

The basics

So what is Crohn's? Well, it is basically severe inflammation. When it occurs in the intestines, it makes them really narrow so that a) food finds it hard to get through and as a result it can cause vomiting b) it causes A LOT of pain and c) the tissues and walls of the intestine are damaged so that food and nutrients cannot be absorbed into the bloodstream and as a result often people with Crohn's lose a lot of weight. It is incurable and chronic. There are so many other related factors too, which in time I will tell you about but that is the bare bones.

The long road to diagnosis

I was finally diagnosed with Crohn's in 1991, when I was 11 years old. I say finally because it is suspected that I suffered with it for at least several years before, if not many years before I was actually diagnosed, and I remember vividly how extremely ill I was when my dad decided to at last present me at the A&E of our local hospital, in the hope that someone would be able to help. Thankfully at that time, an excellent paediatrician wasted no time in admitting me and started the numerous batch of unpleasant tests that I needed, in order to find out what was wrong. By the point that I was taken to A&E, I could not walk and had to be carried in his arms, for I was practically a skeleton and extremely weak. I was in agnosing abdominal pain which wracked my whole body, and vomited every single thing that was put in my system, including water. To be totally honest, in my own head, I was unsure whether I would live, because even as a child I could feel myself fading away, but I remember praying to God nearly every minute of every day, begging him to save me and to make me better again, as I knew that I really did not want to die. I had come through too much to give up by then and I always had a zest for life and to be a happy and normal little girl.

Commencing treatment - and NO MORE FOOD for a while

So thankfully, after many many tests and after being bundled off to a Professor in Gastroenterology at a major hospital, I was finally diagnosed with Crohn's disease. I was relieved to have a name for all the hell I was going through, although at the same time I didn't really understand what it would mean for me. I don't remember ever questioning what would happen in the future to me, I just accepted it, as many kids do who are ill. I remember observing that from the many a time spent in hospital from thereon, that the children always just got on with their life and just accepted what was happening, whereas the parents would worry for hours about what might happen in the future. At that time the treatments available for Crohn's disease were fairly limited and the only two options open to me were high doses of steriods, which were thought to suppress the inflammation, or to put me on a totally liquid diet, which was to be drip-fed into me via a gravity bag and connected to a nasal gastric tube passing through my nose, down the back of my throat and into my stomach. The Professor decided on that because I would need feeding at night and a lot through the day, because I had lost so much weight and needed feeding up, and also because how widespread my disease was then. I didn't have any choice back then as to what treatment I would prefer and was a rather unhappy about the thought of being fed like that (and of course NO normal food or drink) and my main concern was how uncomfortable the tube was at the back of my throat, but the nurses and doctors assured me that it would only be for about 6-12 weeks and then I could start re-introducing normal food again. So although the first night I was a bit tearful, I decided that I would just have to deal with it and look forward to getting better. Unfortunately I was in hospital for quite a long time as my body kept rejecting the liquid food and I vomited many times a day. The worst bit was when I vomited my tube up (which happened quite a lot) as then it would be going into my nose but coming out of my throat, which was distinctly unpleasant, and then had to be removed quickly before I choked and then re-inserted again. But gradually, my body started to accept the feed and ever so slowly started to calm down. The nurses did not let me out of hospital until I was fully independent of looking after my tube feeding regime myself and also until I could "sink" my nasal gastric tube by myself and test that it was in the right place by using a syringe to withdraw my stomach juices and using litmus paper to check if it would turn pink and that it was stomach acid. If the paper didn't turn pink, there was always a possibility that I had passed it into my lungs and so I would have to fiddle about with it or remove it and try again to make sure it was in the right place. So by the end of my hospital stay I was all ready to cope at home. I was 12 years old by then as had my birthday in hospital.

Adapting to a new life and new school

So began my new life with the tube and my gravity feeding bags. Unfortunately the hospital didn't have a spare drip stand for me to have at home to start with, so my sweet father decided to rig up a load of strings everywhere in the house he could think of where I might go, with hooks on so that I could hook up my drip bag and so it would still be higher than my head and would still work, seeing as it worked on gravity only. So the various strings and hooks (including one in the toilet!) were quite a source of amusement and I quickly settled into a routine at home. I didn't enjoy being fed all through the night as it made me sick and very uncomfortable and full, but it was something I had to put up with.

As I was at the age to start secondary school, I had already been missing out on being at my new school and making friends, so when I was a bit stronger, it was decided that I should start at my new school. There were a few obstacles, seeing as I was being fed by gravity feeding, there was no way that I could go from lesson to lesson like that, so instead it was arranged for at least 2-3 hours a day to sit in the welfare assistant's room/sick bay with my bag hooked up on a curtain hook. I had to sit there and miss several of my lessons, but instead did my work on my lap and was allowed a visit in break times by my best friend, seeing as I couldn't go outside to play. It seemed to work fairly well, although it was a worry that I was missing out on quite a bit in class, but nevertheless I carried on like that for at least a year or so. In the end however, the hospital and local authority offered me one of the first portable feeding pumps ever to be invented, which meant that the liquid was machine pumped into me and I could carry around the heavy machine on my shoulder with a shoulder strap. I always had to be careful of all my tubing, as it was always so long and often tripped up on it when I wasn't looking what I was doing! But although some cruel pupils thought it great to poke fun at me carrying this machine around with me, it gave me a great sense of freedom, because it meant that I wouldn't have to miss out on any more lessons, as I could carry it with me and just hang it on my chair. So life was much improved. It did prove difficult however travelling to and fro on the bus, as I always seemed to be at the bottom of a bundle (where I was at the bottom of the stairs of a double decker bus and kids would all jump/fall down the stairs all at once when the bus was stopping and fall on top of me. I would try my hardest to not be standing near the stairs, but was not always that lucky. And you can imagine how funny I looked whenever I had to carry not only my tube feeding machine pump, but also my games/gym kit as well as my normal rucksack with all my books and folders in, and then PLUS my violin case which was rather big too. I don't actually know how someone as small as me could manage with all that weight and bulk but I guess just fierce determination. And I guess I had no other choice. So on I struggled for several years, until it was suggested to my parents that they try and get me some local authority transport to take me to school, and that I would most probably be eligible. So in the end, I had a cab take me to school and back every day, which was quite a welcome because I got exhausted travelling on the bus every day with all my equipment!

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