In 1991 my UC got so bad I needed a j-pouch. Since the surgery I have chronic pouchitis (almost since take-down), a recto vagina fistula (about 5 years now), ongoing urinary track and yeast infections, most recently a Bartholin's Gland cyst. On the most recent exam of the pouch the doctor told me it has gotten smaller and has strictures, which he broke up while doing the exam. I have been on Cipro for about 7 years, lomotil almost constantly, DTO off and on, Flagyl off and on, Citrucel, anti-gas medicine, Imodium, etc.

Recently the r-v fistula has become pretty bad – first it started with the passing of gas (which is quite embarrassing since it can’t be controlled). Most recently I have started to wear a pad because of leakage. About 6 months ago I went to the OBGYN with a horrible “bump” down by my vagina, which turned out to be a Bartholin's Gland cyst according to her.

I am pretty miserable – going to the bathroom about 20 X daily for years now. Dealing with this fistula, leakage, infections, so many drugs and procedures I don’t want to go into all of it. I am wondering if I have Crohn’s. My doctor says they can’t can’t tell for sure. All I want is a more “normal” life.

There are lots of studies and such, between those and reading on here, Doctor Fazio at the Cleveland Clinic seems to be the best doctor to help me. I am now trying to figure out – do you go to him when you have basically explored all other options and are ready to have your pouch re-done? What have people experienced when going to see him? They already have me scheduled for surgery, but of course that is scary – am I doing the right thing or should I try some other things first? Has anyone had long term success with any other things in similar circumstances?

I am looking for stories of success and failures of people that have similar circumstances to mine. Also what are some good questions you asked of the doctor before deciding to have the surgery that helped you make your decision?

Thanks in advance for your help!

What treatments have they done for your RV fistula? The Bart. cyst can be drained in the office with some lidocaine. Hopefully it's not related to your other fistula or a new one.

I ask because there are a number of treatments they can try for fistulae including medical like Remicade. Cleveland Clinic Weston is doing a study on Tacrolimus for refractory chronic pouchitis.

I'm in the same "Does she/doesn't she have Crohn's boat too. I had a failed pouch advancement done for a perianal fistula, and ended up with an enterocutaneous fistula.

I don't know if it's time to re-do it or not. I don't think I have the same issues with pouchitis. I don't know, I haven't had a biopsy lately and the other things are much more bothersome.

You'll probably get a lot of responses to your post.

Keep us updated! And I hope you find some answers.

Lori

I have tried Remicade and fibrin glue for the RV fistula. The doctor at home wants to try the "plug" but from what I have read all that does is buy time until it opens again (if it works)...

The Bart. cyst was drained in the office with lidocaine (talk about painful), but that didn't seem to help it much, it just came right back. Its been back several times and I am concerned this is going to end up in another fistula... Anyone had one of these go away forever? If so how?

Thanks for your post back

Hi there,
Well as a fellow r-v fistula sufferer I thought I'd respond. Our situations are very similar. I've had my j-pouch since 1992 (I'm 28) and while I did not have a lot of complications with my pouch about 3 years ago I had a Bartholin cyst that became and abscess and was I believe the straw that broke the camels back and finished off forming my fistula.

I have since been diagnosed with crohns of the j-pouch, had advancement flap surgery and diveting ileo done last Feb (2006) becuase the draining was horrible - could fill up a pad if I ate anything that made my stool watery. The flap failed, Had the plug procedure that failed and tried Remicade, nothing has helped. Thankfully, I live near Cleveland and so was already going to Cleveland Clinic with Dr Remzi as my surgeon. In November he told me he thought it was time to stop trying to "fix" it and he also had me get a 2nd opinion from Dr Fazio. Fazio agreed with Remzi. I was given the option of "j-pouch redo" but Fazio said that the fistula can still reoccur (especially as I have perianal crohns disease) and 2nd pouches sometimes do not function as well as 1st pouches.

I was also given the option of the kock pouch and I've decided that is what i want to do. It has been a difficult decision to make having my j-pouch excised but I believe my quality of life will be so much better and NO MORE perianal problems!

some of the other fistula girls on this site have had sucess with combination remicade and surgical procedures, some with just one or the other. I'm not one of the lucky ones, but I wanted to let you know you're not alone! And to let you know there are other options besides permanent ileostomy.

I highly recommend a 2nd opinion at the Cleveland Clinic, I figured well if they can't fix it no one can and while its sad at least I know I did everything I could. Oh, and I AM excited about getting a k-pouch


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katie

So do you have your K-pouch yet? I have read a lot about that - several years ago I though it might be the best option. Why is the though of a permanent ileostomy so devastating? Why did you decide on that instead of the re-do?

Thanks for your story - its just nice to hear other people have similar issues. I am 32. Been married for 10 years now - thank goodness my husband is so great. I can't imagine what its like for him either going through all of this. Plus my mom, who was there for me when I had the original surgery, is still there for me now, doing research and trying to help me decide what is best. I don't know what I would do without the support of my family.

I do not have a k-pouch yet but I am getting it in May. When I went to get my 2nd opinion from Fazio he said basically there were 4 choices: leave me as I am with temp ileo, Permanent ileo, pouch-redo and kock pouch.
I have a LOT of drainage through the fistula still, mostly just bowel mucus and a little blood and I'm sick to death of it so staying the way I am is not an option for me.
I just hate the thought of Permanent ileo it is not attractive, I don't like it (and I've had a REALLY easy time of it, no leaks, 7 days between changes etc) but I hate the way I look and feel with it. I feel like a slave to it because I don't really get to choose when I go to the bathroom.
Pouch redo was not presented as a very good option. Fazio basically said it could be done but he said pouch redos tend to have poorer function. Also because I have perianal crohns there is the very real posibility that the disease will easily attack new pouch. I would have to have a mucosectomy to close the fistula which has a high rate of incontenance associated with it and there is always the possibility that fistula could reoccur.
I did a lot of research on the kock pouch including talking to the k-pouchers on this forum and I really liked what they had to say.
So I thought long and hard about it and decided I was DONE with perianal problems and ready to move on with my life.

We have a lot in common My parents were there with me the first time around too (I was just 13) and my mom is coming to stay with me and help me recover from this surgery too. My husband has been wonderful through it all too - we've been married almost 6 years.

These decisions are so personal because it doesn't seem like very many people respond to the same treatments the same way. I think the hardest thing for me to accept that something that was so small could change my life so much and be so difficult to deal with. But My surgeon Dr Remzi said one thing though that really stuck with me "My plea is for you not to suffer"
That has really helped me to make my decision.

Wish you the very best of luck in your research! And I hope you hear some of the "happy endings"

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katie

I am having a hard time understanding what a fistula is. I think I know, then I read a posting and realize that I don't. Can someone explain...and what causes them? Is it common for J pouch-ers to have them? Thanks...and I'm still learning!!!!

Katie, thanks for sharing your story with me - its nice to hear about why you choose the K-pouch and the risks with having a re-do. This helps me get some questions for Doctor Fazio when I go. Really appreciate the info you provided.

Nys - directly from Wikipedia:
A rectovaginal fistula is a medical condition where there is a fistula or abnormal connection between the rectum and the vagina. Rectovaginal fistula may be extremely debilitating. If the opening between the rectum and vagina is wide it will allow both flatulence and feces to escape through the vagina, leading to fecal incontinence. There is an association with recurrent urinary and vaginal infections.