Hello,

I got my Kock-Pouch in July 2009. In March 2010 the valve of my Kock-Pouch was repaired and I got a temporary ileostomy. After this surgery a fistula originated from my Kock-Pouch to my abdominal wall.

In November 2010 the surgeon who created my Kock-Pouch took further ten centimeters of my small intestine to create a new valve for my Kock-Pouch. After this surgery a suture insufficiency occurred. Also other complications occurred. I do not tell you the details to save your nerves.

Last week I stayed in the Turkey, where I had a nice holiday. During this holiday I slept well, but I had interessting nightmares. In one nightmare I saw myself telling the surgeon who created my Kock-Pouch that it was the biggest mistake of my life that I have agreed to the Kock-Pouch-surgeries.

Living with the damaged valve ist not pleasant, because it wets all the time. Also the valve is poorly placed on my belly.

I am suffering from Crohn´s disease since 1985. In 1995 I got my ileostomy. Of course the ostomy bag does not look sexy. But regardless in my opinion the risik-reward ratio of Kock-Pouch-surgeries is very bad when a patient is suffering from Crohn´s disease.

On October 24th I will meet the surgeon who removed my colon in 1997. I hope that he can remove my Kock-Pouch. Also I hope that he can sew up the opening of my Kock-Pouch, so that this hole does not has to heal by itself. Furthermore I would be very happy if he could correct the ugly scar on my belly.

I always make the best of my my life though I am suffering from Crohn´s disease. And I always was a fighter. Therefore I travelled from Germany to Norway in April in order to join the clinical trials of OstomyCure. But I do not want to join these clinical trials anymore. I only hope that my Kock-Pouch can be removed without complications within the next months.

I am very angry at the surgeon who created my Kock-Pouch, because he knew that the risik-reward ratio in my case is extremly bad. The consequences of the surgeries are that I lose about 60 centimeters of my healthy small intestine.

Best Regards
Martin

Yikes! I'msorry to hear about your troubles. It sounds like you were sort of a test case for ileal pouch with Crohn's. I suppose way back then they were unsure exactly what was appropriate for Crohn's. They always knew that ileostomy was OK, but it was only through trial and error that they learned about the Kock pouch and j-pouch with Crohn's. There still is controversy, but I think that generally it is only Crohn's colitis that is considered OK with an ileal pouch. Still, it must be no comfort at all to feel like a guinea pig, an experiment, especially a failed experiment. I don't blame you for being mad.

Hope things work out and you have not lost too much small bowel.

Jan

Hi Martin,
I'm so sorry to hear everything you are going through. I have a Kock pouch and will be going in for my 5th surgery on November 24th to hopefully get it working properly. It is very discouraging when the surgeries don't work out the way they are supposed to, and I can totally relate to how you are feeling. Can I ask why you decided not to pursue with the clinical trials of OstomyCure? Best regards - Dixie

@Jan & Dixie:

Thank you for your answers!

@Dixie:

I will send you a PM.

Best Regards
Martin

I am so sorry that you feel that you have to give up after such a long struggle Martin...good luck with whatever you choose. I just hope that you can finally find a healthy balance for your life.
Sharon