Crohn's and Me (2nd chapter)

So I continued to go to school with a tube stuck up my nose! But now at least I had transport so I didn't have to struggle with buses and cruel school kids. One day I also got offered a new machine feeding pump, which was called a Kangaroo as it shaped a bit like a Kangaroo's pouch. This new machine had lots of groovy flashing lights and made funny noises so it pleased me! (little things have always pleased me!). My closest friends have sometimes called me Ruth-a-Roo because of me having to carry around my Kangaroo.

Unfortunately this total feeding regime was never enough to keep my Crohn's under control and I ended up having to take other drugs alongside it, including steriods for long periods, which I absolutely hated as they made my face blow up and had other unpleasant side-effects. They never did much for my morale, especially when I was a teenager, as I felt they made me look really ugly. So when one of the most fittest boys in my year asked me to be his girlfriend I was amazed. The steriods unfortunately never seemed to do me much good however and I was diagnosed with permanent stricturing (narrowing) of the intestines. This inevitaby meant I would surgery at some point.

However, one day my consultant was very excited at the prospect of a drugs trial that he wanted me to be a part of. This drug was thought to possibly dissolve permanent strictures, which had never been done before. And he thought that it would be worth a try, if it meant that maybe I could avoid surgery. So my parents and I agreed, and I tried it. The result seemed to be incredible. The difference in my before and after x-ray pictures was amazing. It literally seemed to have made my strictures disappear. As a result my x-rays were taken all round the world and are in several medical journals. However, unfortunately the drug never got a patent and I could not take it anymore as we could not get hold of it. It was gutting (excuse the pun!).

So, in June 1994, when I was 14, I was diagnosed with more multiple strictures (narrowings) of my small intestine, and I was told that I needed major bowel surgery. When the surgeons opened me up they were appalled to find 11 severe and long strictures, and they knew they couldn't cut out all of them, so instead they opted to cut out the most severe, and perform stricturoplasties on the remaining 9 (basically this involves cutting and stretching). Apparently at the end they rolled marbles through my intestines to make sure my intestines were wide enough for food! (if I could ever eat properly!).

I went through a tough time following that surgery, as I had all sorts of problems and complications following it. However, I got through it, and once I was fit enough, the nurses took me to see some of the bowel that had been removed in the laboratory. I was amazed at how swollen and large it seemed and couldn't believe it had once been a part of me!

I remember being told by my mother that the doctors felt my surgery wasn't very successful and was almost a waste of time. That didn't really help my mood, but I still fought to stay positive. There was no other option.

I was then prescribed some medication that was a immune suppressant drug, and although it meant that my immunity was lowered, the doctors thought it might help by combating the inflammation in my intestines. I also took a different kind of steriod (one which didn't cause so many nasty side-effects) at the same time. My mum at the time wasn't very well mentally and she thought that it might be "posessed by the devil" and threw my prescription out of the window. That was half difficult and half funny. But I took the drug anyway, as at the time, my doctors thought it was the way forward.

However, although the drug didn't really give me any bad effects that I know of, it didn't actually seem to do anything for my Crohn's either. My crohn's was still putting up a good fight. And I was still having to have a liquid diet, with no normal food. I was beginning to wonder if I would ever eat normally.

Just before my GCSE's I ended up back in hospital with a bad flare-up of Crohn's and my teachers and nurses didn't think I would be able to sit my exams. However, that was when I discovered mind mapping, and started creating mind-maps for all my subjects, cramming revision into the precious hour or so a day that I actually felt well enough to study. And of course this was in the hospital and there was a lot of distractions. It wasn't easy, but even though my teachers thought I might not be able to make my exams, I wanted to try. And I managed to get out in time to be able to sit them. There I was in the exam hall, attached to my feeding machine, and all the time it was whirring away and flashing. I don't expect it helped the concentration of the other pupils. But despite all that, I manged to just about get the grades I wanted to be able to go to college. So I was over the moon.

So I started at college, and studied for 2 years, and passed quite well. All the time I was studying, I was attached to my little machine! And then after college I applied to nursing colleges, to train to be a nurse. At that time, that was what I wanted to do. I think partly it was that I wanted to give something back to the medical profession, and all the years that I had received care, both in children's wards and as an outpatient. I managed to get in, to a nursing college in London. In the Summer before I started I wanted to see if I could manage without my machine, as I knew it might be tricky on the wards with my machine. And I so wanted a fresh start, and to be able to be more normal. And I wanted the same chances that everyone else would have. However, to be fair, in the interview I had told them all about my health problems and they still decided to give me a chance, for which I was ever so grateful. I just wanted to be a nurse so badly.

Unfortunately within about a month, I had to go back on the tube feeding, and although I coped with this fine, the head of nursing at my college wasn't happy at all, and basically wanted me to leave. He didn't think it was right that I nurse with a tube stuck up my nose. I couldn't understand what the problem was. If nurses in wheelchairs could nurse, then why couldn't I. But I had a battle on my hands, as basically I had no support. I went from tutor to tutor to try and find someone who would back me, and although I eventually found someone who was really understanding and could see my determination and desire to be a nurse, in the end she was worried for her job and didn't feel she could back me. I had a really hard time, in fact I would say that I was bullied by the man who didn't want me in his nursing school. He was so keen to try and get rid of me that he even sent for all my work, I presume to try and catch me out. But he couldn't. As my work was fine. But he could and did stop me going on placements. I battled for 2 years, but at the end of 2 years I kinda lost the fight as I found myself in a catch 22 situation. I needed to finish my practical work placements before I go any further, but the head of nursing wouldn't let me go on the work placements because of my feeding tube. On top of that, the stress had made my condition worse and my weight plummeted to 5 stone. In the end my boyfriend begged me to give up the fight. I so did not want to. In fact I wanted to fight on till the bitter end. But I knew that if I did, I might not still be alive. It was one of the hardest things I have had to do.

After that it was terribly hard as not only did I have to cope with the realisation that I could not achieve my dream, but I also had to move back home, as I had no money and nowhere else to go and I was told I need to rest and get better. And I felt like my family were saying "I told you so" as they didn't want me to go into nursing. But after a few months I decided that I needed to pick myself up again and re-train as something else. And I decided that training as a secretary would probably be the most sensible thing, as I learnt touch-typing at school and thought if I learnt other skills, then I would always be able to get a job as a secretary. So that's what I did. And then straight away I joined a temping agency and temped all over London. Health-wise I was still struggling, but I was mostly off the tube-feeding and was able to take liquid as a supplement to help keep me going nutritionally. I ate some normal food, although not much.

After a while, I decided that I wanted to do more than temping, and I was interested in learning reflexology. So I enrolled at a reflexology school and studied alongside working. I also changed my job to be nearer home so that I wouldn't have to be tired out with all the travelling, and started work at my local hospital. I began as a medical receptionist and then started as a medical audio typist and then gradually gained enough experience to be able to be a medical secretary. I enjoyed this as I liked all the medical terminology and the varied tasks. Soon, I was wanted by several different departments and I found it hard to choose. In the end I decided to split my time between each. And then I completed my reflexology course and became a fully qualified reflexologist.

Since being in Gloucestershire, I have had 5 more operations! Three of these were a result of bad complications post surgery, including internal bleeding, abscesses, widespread infection and such like. I have had an ileostomy, which has now thankfully been reversed.

I have also been put on a new-ish treatment, called Infliximab, which is quite a toxic drug, given through a vein every 6-8 weeks. So far it has done the most for me than any other drug I have been on, so I am praying that it will help me to stay well.

And that brings me up to date, as I am now recovering from my 6th operation. I am getting there - slowly but surely. I just hope that is my last operation and that I don't need anymore. And the hope is that now I've had this surgery, that the Infliximab treatment I am on, will get me and keep me well. I want to be well more than anything. It would make me SO happy.

Here's to health and happiness!