My story

Aged 14, I came down with Crohn’s disease. For years, I had been enduring the constant pain, diarrhea, weight loss, fistulas, and all the complications you can imagine. In 1992, I had lost the struggle and had to undergo emergency surgery. I was 27 years old when “my new life with an ostomy” began!

Only the sigma was left from my colon with a length of 27 cm. The last part of the small intestine had to be surgically removed and I got a loop-ileostomy – temporarily, for a start, to repair the recto-vaginal fistula. The fistula tract from the transverse colon to the stomach was equally removed. Everything worked out just fine, and I was back home after a week.

Right from the beginning, I made no secret of my ostomy; thus I wasn’t particularly embarrassed when he gave off tones in public from time to time. He belonged to me and was spontaneously named "Fritz Kotz" – don’t ask me why! Very soon, my changes became a part of everyday life, and I constantly beamed with joy because I didn’t have any more problems caused by Crohn's disease.

Finally, he let go of me, and, for once, I could start thinking of something different. I flourished, and I revved up, literally speaking! A few weeks later, I had to go back to the University Hospital of Tubingen to have my recto-vaginal fistula repaired. This recto-vaginal fistula, which often occurs in patients with Crohn's disease, was closed by a "flab advancement of the intestinal wall". Hoping for the best, I had the relocation of my loop ileostomy done several months later. However, he broke again under the strain of defecation after only two days. Tough luck!

“Let’s do it again”, I thought, after a convalescence period of a few weeks. I had them apply a permanent ileostomy and, a short time later, had them close the fistula tract again. Crohn’s disease had disappeared! Never before had I experienced such a quality of life – I was so happy! A year later, I was out of luck on the relocation of the ostomy. You may hardly believe it, but this nerdy fistula tract formed again!

Defiantly, I thought: “One perforation more or less”, and I just didn’t let my lower lip pierce.

In 2009, I was forced to have the 27 cm long stump of the sigma removed. Fortunately, it wasn’t Crohn’s disease as can be read in my book “Emergency exit”!

Unfortunately, not available in English!