Vicky's Story

Hi, I’m Vicky, aged 20 from England. This is a very condensed version of my life with Crohn’s disease and how I become an ileostomist.

My problems first started when I was thirteen in the autumn of 1995. I started getting diarrhea, abdominal pain, was very lethargic, totally lost my appetite, was passing blood and mucus and also had an anal fissure. A few trips to the doctor were made and I was sent away with antibiotics. On the third trip I was referred to the local hospital where I was admitted. By this time my weight had plummeted to 27Kgs (I was about 5ft), I was going to the toilet 15+ times a day, I wasn’t eating anything and all I wanted to do was sleep.

I was diagnosed with having Crohn’s Disease in December 1995 by sigmoidoscopy with biopsy and put on Prednisolone, antibiotics and NG feeds. I carried on the NG feeds at home for a month when I was discharged on Dec 23rd in time for Christmas!

I improved and returned to school after missing 5 months but was back in hospital within a week with abdominal pain again. This time I was put on a liquid diet and sent home after a week on this ‘yummy’ orange flavour drink, but I was back in again after a colonoscopy revealed that my colon was in a really bad way. This was my first colonoscopy and was an awful experience for me. The sedative didn’t work so I was wide-awake and just cried through it all because of the pain. In the end it was terminated because it was causing me too much distress. The surgeon wanted to perform a colectomy ASAP, but my paediactrition wanted to refer me to a specialist at another hospital, and the latter was what was chosen.

So off I went, was put on some meds and I started to improve. But after a few months I started to deteriorate and it was decided that surgery was the next option. So on 21st Oct 1996 I was admitted and had half of my large bowel and one of my fallopian tubes removed and a temporary ileostomy was created.

However, a week later I was admitted to ICU and had more surgery as I was getting severe abdominal pain and it was distended. My small bowel had perforated and the toxins were tracking up my left side, so they had to extend the scar up to just under my left armpit (the original operation was done through a ‘bikini line’ incision). I had peritonitis and was on a ventilator etc for a week and had 3 more operations in that week. They said they had caught the perforation just in time ­ a few hours later and it could have been a different story...

I spent another week in ICU and then I was admitted back to the ward, only for my small bowel to perforate a day later. So I was back in surgery and ICU again. Anyway, things got better and I had my stoma reversed on 2nd Dec 1996, although it would have been reversed sooner if my lung hadn’t collapsed! I recovered slowly and managed to try to walk again for the first time in many weeks and was discharged just before Christmas! Woohoo!

10 days later I was back in hospital again with what they eventually found to be C.Diff. I was put on long term TPN and sent home after a month. I had TPN at home for a few months through a Hickman line and also returned to school after another 6 months off.

That summer I started doing NG feeds overnight at home which helped me nutritionally and I worked for my exams which were looming ever more closer. I managed to come second in the year with my GCSE grades although I was deteriorating health wise.

It was decided that another temporary ileostomy was in order, which was performed in Nov 1998. I lived with my stoma for a year and I can say it was the best year I had had since being diagnosed. I managed to travel to Canada in the summer of 1999 and had a great time!

I had this stoma reversed in the autumn of 1999 and also ended up with a blockage, which was not a nice experience! The doctors were very reluctant to operate, as complications would be increased due to all the scar tissue in me. Anyway, surgery was avoided by a few hours (I had reached the stage of vomiting faeces ­ lurvely!) and I recovered.

Anyway, I returned to college but I never really got better. I was also having regular surgical dilations as I had an anal stricture. I took my ‘A’ Levels in the summer of 2000, got good grades but had to postpone going to Uni that year, as I wasn’t very well. Remicade/Infliximab was started and I improved a bit, but still never reached that illusive remission. I had the infusions quite regularly and started Uni in 2001. We had started discussing with the doctor and surgeon the possibility of having a permanent ileostomy as I had tried all the drugs available ­ prednisolone, pentasa, azathiroprine, thalidomide, methotrexate, liquid and foam enemas, liquid diets, Remicade and I can’t remember any more!

I continued to deteriorate during my first year at Uni and it was finally decided that a panproctocolectomy with permanent ileostomy was the way to go. It was a very difficult decision, not only from the fact of having a permanent stoma, but also the fact that the surgery would carry more risks with me compared with somebody who hadn’t had surgery before. Inside my abdomen was full of scar tissue ­ everything was adhered to everything so the risk of damaging other organs was high. Also, I have Crohn’s in my small bowel and stomach so there was no guarantee it would rid me of all my symptoms, although all the symptoms associated with the Crohn’s in my lower bowel would disappear.

I came through the surgery but lost quite a bit of blood. I recovered and was discharged a month later. It would have been sooner but my gut stopped working about a week post-op so nothing was moving through but a lot of bile was coming up!

Anyway, here I am today, 2 moths post-op. I am about to start my second year of Uni studying Nutrition/Dietetics, which I’m looking forward to. I’m managing to put on weight AND keep it on. I have hardly any pain and have bags more energy. Obviously I still have down days as I’m still accepting my ileostomy emotionally but I soon kick myself and look at the positives. The positives it has given me have been HUGE and I’m looking forward to finally grabbing life with both hands and squeezing the most I can from it.

See you around!

Vicky

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