I fell sick when I was 15 ½ and after years of Crohn’s disease where I suffered from pain, weight loss, diarrhoea and fistulas. I was finally operated on when I was about 28 years old, and this is when a new chapter in my life began!
They did not remove the rectum but about half of the small intestine. Instead the surgeons performed a temporary ileostomy (bringing the cut end of ileum through the abdominal wall and creating a stoma), leaving the rectum intact in the hope of rejoining it to the remaining ileum at a later date. Everything went well and after a week I was back at home.
Right from the start I did not make a secret out of my stoma and I was not at all embarrassed when he made noises in public. He even got the name “Fritz Kotz”! My life went back to normal and I was very excited to be pain free. Finally, the Crohn’s disease settled and I was able to think about something else.
I blossomed and lived life to the fullest. I went back into hospital for a fistula repair and also had surgery on my rectovaginal fistula which is a common type with Crohn’s disease. After a week in the Tuebinger Hospital I went back home. Ten months later I had enough courage to reverse the stoma but unfortunately the fistula returned within two days while I was still in the hospital. Bad luck I guess! Then after a few weeks of taking it easy I went back to the hospital and had an enterostomy done and the fistula was closed again. The Crohn’s disappeared again and I was happy and enjoyed the new found quality of life.
Another year passed before they reversed the stoma again but the same thing happened and the stupid fistula returned!
Defiantly, I had more than just my lips pierced! What’s one more hole I thought?
The fistula caved in and I had my peace.
Many years have passed since then and I have accustomed to my stoma so much that I declined to reverse the stoma again at my last check-up.
Fear or cowardness of the unknown or just a precaution and rational thinking – I am not sure – but I still have time and I want to think things through carefully.
At this stage I would also like to point out the DCCV and ILCO, are two great support groups. They are always up to date with the latest information and I have been a member for a long time.