I am in jeopardy of loosing my pouch and having an iliostomy. Will these ensure that I do not have another fistula or abcess? That is what my main problem is along with cronic pouchitis. Saw a doctor at the Cleveland Clinic here in Toronto on Monday and he concures with my Mt. Sinai people that the pouch should likely be removed. I keep forgetting to ask about this perianal issue. I am sure I will get answeres here. Thank you.

Hi Susan,

Yes, for me getting rid of my j-pouch meant getting rid of all my butt issues including perianal abscesses, ulcers, chronic fissures and constant butt burn. In other words I no longer have any pain in my butt.

I wouldn't trade those painful days for all the tea in China now. I am just so glad I had my j-pouch removed.

I didn't have a fistula but I do believe that the surgeon will fix this too when he removes and sews up the anus. I'm sure someone will be along soon who has had a fistula and can answer your question about that.

Good luck.

Shell

Hi Susan, did you have any problems with the removal of the J pouch? At my last operation in 2003, when they gave me back an ileostoma, the surgeon told me that they couldn't remove the pouch due to serious adhesions. However, lately the pouch is continuously infecting so they are looking into other options now?

i just caught this post and wanted to add to it. I dealt with chronic pouchitis, fistulas, and abcesses and since I had my pouch removed(a year ago) I haven't had butt issues. It has been a major relief. No need to wear panty liners, no more creams, no more sitz baths, no more digital rectal exams , and finally, no more running to the restroom.

Susan,

July will be my one-year anniversary since getting my permanent ileostomy. I had a j-pouch for 15 years and developed a vaginal/j-pouch fistula after four good years with my j-pouch. Over a period of approximately 11 years, I did everything that was medically available to try to close my fistula and had so many surgeries that I lost count, including a graciloplasty. After that surgery I was much better with the drainage from the fistula into the vagina but developed terrible incontinence problems from all the scar tissue resulting from all the surgeries.

I am so grateful and tremendously happy since I had my permanent ileostomy. I couldn't wait to have it. I was done with it all; I had tried everything. I went in for the surgery knowing that there was nothing more that could be done and I couldn't wait to get on with my life. I now can eat anything, don't take medication anymore, and have no butt issues whatsoever. My skin use to be raw done below and always painful. I use to get up several times during the night to clean myself up from the fecal material that leaked out all the time 24/7. Now my skin problems are a thing of the past. I can sleep through the night and make plans and have fun during the day without worrying about leakage and accidents. I got my life back!

I had my surgery done at the Cleveland Clinic in Weston, Florida and I was in excellent hands there. The surgery was long and difficult because my j-pouch, where the fistula pathway had scarred at the vaginal wall, had attached itself to the vagina and the surgeon had to take special care to release it. Post-op I had a slipped stitch at my anus but it filled in and healed up within about four months. I had no real discomfort down below after surgery and I remember that I used squares of gauze in the beginning because there was some oozing from the area. Everything healed up very nicely, both below and abdominal area. My stoma is really perfect; the surgeon did an excellent job. I have no problems with any kind of appliance and get between four and five days between appliance changes.

Take it from someone whose been there. Don't waste another moment of your life with fistula problems and pouchitis. Seriously consider the ileostomy; I don't think you'll regret it. But, of course, I can't tell you how to live your life. You'll know when it's time to get the ileostomy. I was so energized the morning of surgery; I just knew my life was going to be 100% better after I got rid of my messed up, fistula riddled, j-pouch.

Best of luck to you with this very difficult decision.

Caty

I just had my pouch removed because of chronic fistulas. I had been through 3 repairs and still ended up with more every time. I'm still healing up but have been told that perianal disease is thought to be caused by something in the stool so diversion,perm. or tempory) often fixes fistulas. For some people they will always come back as part of their crohn's disease. It is very unusual for fistulas to recur after perm. diversion but it can happen. Best of luck on making this decision. I would look at all the things you have given up to deal with constant bum problems and them weigh that againt what life with an ostomy is like.