I am wondering if anyone has gone from a j-pouch to a temporary ileostomy for a fistula to heal.

If so, how long were you out of commission?

Thanks,

Deb

I had a temp ileostomy for a fistula but during that time they also decided to do a major surgery to repair the fistula. I got the ostomy and was reconnected six months later. But like I said, I had a major surgery in there and wasn't just letting it rest to heal so I might not be the best person to answer.
They did wait three months though before doing the surgery to see if it would heal and it didn't.

Hi, Deb
So let's see....I had my takedown in June 2007 and developed RV fistula symptoms about 2 months later... Developed an abcess as well that led to another one. They replaced the ileo at the beginning of October and I began Remicade treatments to try and heal them up. At last check, one of the fistulas is responding to the Remicade, while the other is not. Fistula repair surgery on that one at the beginning of April and then hopefully takedown #2 in July if all goes well. It's not a quick process in my experience, but I'm hoping it's worth the wait.

Wow, sounds like a process. I've had my pouch for over 7 years and am not happy about this rv fistula. I had an MRI on Saturday but have not heard any results yet. I was diagnosed last June when an abscess let go and caused it. I guess i'll just have to wait and see. I know that my doctor is going to want to do the temporary ileostomy to let it rest and see if it heals but it just seems like they never do. Thanks for everyone's input.

Hi Deb,
Just thought I'd chime in since (I hope) I am at the end of this process. I had my temp ileo in November and a plug repair done the first week of January. My surgeon thinks the fistula is closed, but wanted me to wait 3 months after the repair before having the reversal. I am scheduled for takedown on April 3rd. The one good thing about the temp ileo was the immediate pain relief since the fistula wasn't being irritated all day long. The healing of the repair was much easier than when the surgeon tried to repair it without a diversion. Good luck to you!
-Charlene

This is just dreadful. I've been walking around with this leaky fistula since last June. I've felt (okay)but don't feel right. I need to take care of business but have been putting it off because I am dealing with putting my dad in a nursing home. That is depressing in itself. Thank you all for all your responses. Can I ask one more thing? When you went in for the temporary ileo, how long was the hospital stay? and how long was the recovery?

Thank you so much, Deb

I was in for 5 days and they let me leave because my mother-in-law was with me. She has a permanent ileostomy and is an ET nurse. My main issue was dehydration. Recovery was just a couple weeks as for discomfort, but the dehydration issues would come and go and then there were the usually wafer issues etc. It was my first experience with the ileo as my j-pouch was done in a one-step operation. It was nice to not have the pain and drainage from the fistula though. In deciding to have the surgery,I waited months thinking, I'll just get through Christmas, etc. and finally just said "Enough!". I'm sorry to hear about your father. That alone would be very difficult emotionally. I will keep you in my thoughts and prayers.
-Charlene

Charlene:

I find every excuse in the book not to take care of myself. And since we have no experience with the ileo, it's hard to give into it. My next excuse is that I have 3 kids graduating this year. Two from college and one from high school. See, I told you I had a bunch of excuses.

Thanks for your words of wisdom...Deb

The placement of the ileo was an easy surgery for me compared to all my others, but I had an ileo before the pouch, so I was used to caring for it. I think I was in and out of the hospital in 3 days. Nothing like my step 1 (a week) and that awful nightmare after the obstruction (a month!).

Hi Michelle:

That's encouraging. I do not want to be in the hospital for any length of time. When I had my one-step, I was in for 14 days. Way out stayed my welcome...If this could be done as an out patient, i'd opt for that.

We'll see...Thanks for your input...Deb

Deb, there are quite a few people here who reverted back to ostomy's to heal the fistula and i think they had a better quality of life with the ostomy. I had 2 fistula repair surgeries that both failed but have been on Remicade since last December which has been very successful. What type of fistula do you have? have you tried other remedies? fistulas are so complicated and i feel for you....i couldn't have gotten through mine without some people here. You sound like you have a great attitude. Let me know if you need additional info. I had an R/V fistula.

Same thing here, Deb, if you ever have any questions about some of the surgeries I've had I'd be glad to share my experiences. I've never had the treatment of Remicade or anything like that but you're welcome to pick my brain about surgery.
I hope you find the time to take care of yourself!

You ladies are great! Thanks for the support and stories. I got a call from the doctor this morning letting me know that the MRI has confirmed the 'substantial rv fistula' which I already knew about. Since i've had this nagging back pain I was concerned about that as well. The MRI also showed a 3.5 cm. fibroid that is in the midst of all of this. The results were sent to the surgeon in Boston and I'm waiting to hear from him. Since I am 50, I know that the fibroid is common in women and that it might go away once menopause happens. I'm not really too worried about it but wonder if all of this is causing my back issues.

Take care, Deb

Hi Deb,

I had an rv fistula that appeared right after my two step take down. Two repairs failed and so I diverted for 8 months and it had healed mostly so they did a small repair and left the ostomy for another 4 months to let the repair fully heal. within a month of the take down I had developed another fistula but it was a perianal fistula. My doctors decided after another appeared that I had perianal disease. The year with the ostomy was my best year in the 5 years I have been dealing with IBD.

I actually went to my GI today and told him I want to go back to it and have my pouch removed because I have now had these two fistulae for a year and a half...too long to put up with it all. I am not looking forward to some of the random annoyances of an ostomy but I am hoping for a better quality of life.

I don't recall it being a longer stay than 4-5 days but I was already comfortable with how to change the bags and all that jazz from my 2 step. Make sure you have a WOC nurse available to you not just a nurse that knows just the basics. It will be helpful to read in the ostomy section about how to treated damaged skin(10 x scarrier when the damaged skin is around a stoma than when it is just on your bum) I had some wiggin' out episodes the first days home when it seemed like getting the pouching system and skin to be okay was never going to work itself out.There is a mental adjustment as well as a physical one.

Best of luck! you will find plenty of advice here and support when the time comes

I have no advice for you regarding the ileostomy rest, but I do have an RV fistula. I have had it for about a year and a half now. My pouch is almost 12 years old, and I had absolutly no problems with it until I got an abscess (a year and a half ago) that appears to be the reason for my fistula. At first it really freaked me out, and I really needed to know how my surgeon was going to fix this problem, and fast! But as I considered the repais options, many of which do not have high success rates, I realized that the best thing for me was to keep my fistula. I never had an ostomy (1 step surgery), so it is not easy for me to know how easily I would have adapted to it. And surgery on the pouch definitely carries some risks, so we need to be ready to accept the ostomy. And the Remicade along with the other drugs that must be taken seemed risky compared to my level of suffering.

So I am actully curious to know if my fistula is perhaps much smaller and less bothersome than most people's, since it doesn't seem to be worth surgery or drugs for me to get it fixed.
I think that there is another girl on this board who also has a fistula that she is "keeping".

But I do wish a fistula-free pouch (and vagina) for everybody currently going through a repair attempt!

Corie-jay