Hi all,

My first time here and looking for some advice. I had UC for about 20 years and just had the first of 2-part surgery this July. At first everything seemed peachy, was out of the hospital in about 4 days and on my way to recovery. Then about 20 days out I developed a fever with abdominal due to a perianal abscess that developed as a result of a fistula coming from the top of my newly formed j-pouch (at surgical line).

To be clear this is all internal. Fistula does not come to the skin. I had a drain put in and was put on antibotics. A couple of weeks later there wasn't much coming out and they decided it could be pulled because the hole was tiny and they thought it would scare over. No dice. 2 weeks later abscess is back. So dealt with drain and more antibotics for a couple of months and two weeks ago had a procedure to try to close the hole with fibrin glue. Radiologist was confident the hole was plugged so they pulled the drain. No dice. Back in hospital a week later with another drain and more antibotics.

Other than this issue, I've been doing pretty well. I lost a bunch of weight at surgery which has all come back plus some. Energy levels are up compared to pre-surgery. Appetite is good, etc.

The plan now is to go ahead with take-down surgery and go in and surgically close the hole. My surgeon is very reputable and accomplished. I do trust his judgement but I have just lost a lot of faith in this whole system and am wondering if I'm going to continue to have a bunch of issues with the pouch. Thinking about cutting my losses and going to a permanent ostomy.

My biggest issue prior to surgery was urgency to the point of incontinence. I've has some leakage issues with mucous already and just wonder if I will have issues with loose stool post take-down. Anyway, I know there isn't a real clear cut question here, but just looking for feedback from others who may be able to relate.

Is this plan crazy? Should I cut my losses now and move on with my life? Any thoughts greatly appreciate!
Original Post
I had my pouch put in 2008. All kinds of issues and infections and abcesses.. Had a few sinus' that are being worked on. In February they found a leak at tip of jpouch that caused a bad spinal infection, and back to ileostomy i went . In August i had surgery to try and close the hole, it didnt work. I am trying one last scope up the wazoo to try and close with an extra large bear claw and a new improved Fibrin Glue. Dr.Shen at Cleveland Clinic has done all my procedures and will give this a 50/50 shot of working. I have my doubts but i told them no more surgery for me. way too many infections and complications that almost killed me. I hear pouch removal is a huge surgery so if this fix does not work, i will put that off as long as i can. The loop ileostomy and jpouch will stay as is. Surgeon said as long as no issues I can leave it be, he said other fixes and stuff could be coming down the pike, so might be some opportunities down the road, so im not going permanent unless im forced to.
I had UC for 2 1/2 years. I had my colon removed almost 8 years ago. When the surgeon removed my colon he also created a jpouch the same day. He hadn't scoped me and "did not realize" how diseased I was and therefore cut a hole from my jpouch to my vagina. Although, I quickly felt better, I had mucous coming out of my vagina due to the fistula. The surgeon also severed my ureter causing me to have a second surgery to repair two days after colon surgery. I was in the hospital for 10 days and left with a 10 inch stent in my ureter, which stayed for a month. Needless to say, not very comfortable.

For the next 7 and 1/2 years I had countless procedures to repair this surgeon caused fistula. When I say countless, it was over 30, maybe 40. At least 10 of them were major surgeries, a few over 9 hours. One thing I always had was hope and the surgeons always had hope. As long as there was hope, I was willing to do anything.

This past August, I had takedown, actually 3rd takedown, but the first 2 lasted less than a day, due to the stool that would immediately come out my vagina.

I have to say, so far so good! After 3 months, I feel I am doing as well or better than how people do after a year, according to what I read on this site.

Of course I wish none of this happened, but I am so glad the surgeons and I did not throw in the towel years ago. I feel great (I have since they removed my colon, except when recovering from surgeries, which I usually bounced back from after a couple of weeks). I don't take lomotil anymore, I use the bathroom 4-6 times a day, no pain or urgency, and I sleep through the night. I take metamucil before each meal (3 times a day). I had tons of mucous before takedown, as most people do, and none now.

I recently took a scuba course, which I put off for years, and am taking the open water test in the caribbean in a few weeks. For now, I am just living!!!!

Good luck, whatever you decide, but once again, hope will keep you going. It did me and glad it did. I do have a great family, and my parents were with me every step of the way, which helped a lot. My mom slept in the hospital every day. I was diagnosed when I was 14 and am now 24. I went to college, got my masters, and now a job. All while dealing with this, having surgeries during vacations and summer sessions. It wasn't easy, but worth it!!!
I would cut my losses. Fistulas are very difficult and in my case, once one formed from the pouch, more kept forming. The one thing I can say though is that I tried everything and have no regrets whatsoever. Think long and hard about this because maintaining a j-pouch that has a tendency to fistulize is difficult and painful. Good luck!
Thanks for all your responses. Met with the surgeon again this week and he seems confident he can close them based on his past experience.

He said he would only proceed with the takedown if it was very straightforward. More likely it would wait to ensure that no more fistulas form.
After watching and dealing with everything my daughter went through and is now going to a perm ostomy this would be my suggestion. Have the surgeon fix them surgically and wait for takedown. Give them time to heal and see if any more pop up. I don't think I'd give up completely quite yet. But it is your call and you know when enough is enough. Everyone has their own threshold. My daughter has seen enough of her life wasted with pain and surgery and has her mind made up. Removal is set for the 26th.

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