Yet another fistula question! As you may tell, my doctors won't give me any useful information apart from "go back to the bag!"
So, now what I want to know is - is there any problem with having fistulas long term? Apart from the associated pain/discharge etc that is. My doctors tell me that I will become incontinent because of them, but is that a definite?
If not, I think Im just going to stick it out until they come up with a good cure

I have the same situation and was also wondering that same question. Jan? any Feedback?
Thanks

As long as the fistula does not have an abscess behind it that could get worse if the fistula prematurely closed, the only problems with long term fistulas is the nusiance of having the constant drainage. I suppose if the fistula was going through your sphincter, it could cause damage there, but once the tract is there, the damage is done. If it was emptying into your bladder, it could cause serious urinary tract infections, but that does not sound like the case for you.

If they are not offering any useful surgical repair and are only offering ileostomy, I'd just hold off as long as you can live with the drainage.

Have you tried Remicade or Humira? May not work unless you have Crohn's.

Jan

I really need to respond to this. I had a vaginal/j-pouch fistula for eleven years. It started at the connection of the j-pouch to the sphincters and then followed through the tissue and ended at the very distal opening of the vagina. Waiting is okay as long as there continues to be minimal discharge and gas. My problem became more serious when I started to get symptoms of pouchitis. The pouchitis symptoms made me very sick all the time and uncomfortable. That's when I started the extensive process of having all sorts of surgical repairs done. One has to consider that each time a repair is done there's more chance of it not working and all kinds of problems may result. I had every repair imaginable, many surgeries, many weeks of healing and the result was total incontinence and finally loss of the j-pouch, sphincters, and anus, and a permanent ileostomy done (July 19th).

I think you should hang in if the fistula is tiny and managableable. But once you start doing repair after repair, chances are you will suffer a whole lot both physically and mentally. I wish I had had a crystal ball and could have known my outcome would have been a permanent ileostomy. I would not have wasted all those years; I would have had the ileostomy and had a fuller, happier life. I would not have subjected my husband to all of it. He is a true blessing.

I just wanted to keep my j-pouch and go to the bathroom like everyone else did. Seventeen surgeries later I still ended up with a permanent ileostomy--something I should have gotten to begin with at the first sign of the fistula. I didn't know... My life is so wonderful now. I can eat again; I have no more leakage; I can sleep again (and so much more that I haven't even begun experiencing yet because I'm still home recuperating). I start back to work next week.

Vaginal/pouch fistulas are really impossible to close. They almost always return, in my opinion and in my personal experience. When my surgeon went in on July 19th to give me my ileostomy and remove my j-pouch, he discovered that it had adhered to the vaginal wall and had to spend considerable time releasing it. Everything was a mess in there and there were lots of adhesions. My vagina opening is so small now, so one can just put two and two together and can figure out how difficult it is for me in that area--impossible actually. Just keep in mind that the fistula repairs just don't affect your j-pouch and sphincters, but can also affect your whole sexuality. Scar tissue is a bad, bad thing.

I apoligize if I have been too open on this subject, but I have truly been through it all, and I just hope I can educate some women before they begin the fistula repair process. I think I helped Sierra Barb with her decision to just go for the permanent ileostmy and maybe I will help a few other women along the way. I wish you all the best.

Caty

This message has been edited. Last edited by: Caty,

Okay here's my situation. I'm not convinced that I have a fistula. I have no leakage and only some light bleeding when I wipe myself. The blood is not all the time. Twice in the past 2 years it got to the point where I had to go to the Dr to have it drained & it healed and that was that. I have a light opening on the inside of my butt cheek (so I guess this would be an anal fistula) but I have no pain & no discharge. So I am really confused as to whether this is a fistula or not.
Any feedback would be appreciated.
Thanks

Hi all

I have a fistula that appeared almost 2 years ago as a result of an abscess - this was 5 years after my pouch formation. The only treatment I've had so far is a seton drain which has now been in place since summer 2006. However the leakage seems to be getting gradually worse. Does anyone know whether this is common? Could it be a result of the seton knot eroding and widening the fistula tract? All tests I have had - including last year - do not indicate Crohn's.

I was really ill with inflammatory arthritis as a result of Cipro a few months ago and have now been offered pouch removal. The arthritis has now completely settled and I am now seeking a second opinion about the best course of action. Although I have intermittent pouchitis/cuffitis I can deal with them but the constant leakage and flare ups of the fistula is really wearing me down. Although I really want to be able to keep my pouch dealing with the fistula is becoming increasingly problematic and my quality of life is deteriorating - as it did with the UC. It seems from what I've read as though some people can find a way forward -I guess everyone's situation is slightly different. Caty, your post made me think that I might have to call it a day - I'm just really worried that another major op will put me at risk of even more complications. Like you afj would like to be able to hold on until more promising solutions are available - the second opinion I'm seeking is at St Mark's in London so I'll keep you posted on what they say.

Alison

Caty - thanks so much for your post, it really supports my view of how I want to manage my fistulas.
Currently, I have a couple of fistulas that have minimal leakage, that swell up when I get pouchitis, and are sometimes painful and stop me having sex. I have accepted that at some point in the future, I will have to go back to having a ileostomy. However, I am still quite young, and having fistulas is definitely preferable to having a bag right now.
My doctors do not understand this AT ALL. I guess their jobs is to treat the problems they see, but they seem hell bent on telling me that going back to the bag will be great. Like they have ever had one. It drives me nuts!
Anyway, I am just going to stick it out. I recently had a seton put it and am back on cipro and flagyl, and wheatgrass shots, olive leaf extract and dermawheat to give the fistulas a kick in the butt. Fingers crossed!

AFJ and Lawrance,

My situation is almost exactly like Caty's, and she was helpful to me in making my decision to go to a permanent ileo. It took me five years to get clear about it, and as I looked back, though I had the pouch-vaginal fistula for only about 7 months, during the five years of my J, I had about 5 good months, many revisions, five big open belly surgeries, constant hospitalizations (probably 40 0ver five years) for dehydration or obstruction, and my final J, cuff, and fistula removal/repair took nearly 8 hours. I was full of scar tissue and adhesions, too, and the surgery so stressful that the end result of so much trauma over five years is that I now have adrenal insufficiency.

Nonetheless, I can't imagine why I waited so long to go to a permanent ileo. Well, of course, I can - it was a BIG DEAL to give up ostensibly "normal plumbing," having been so invested in the choice of first a continent ostomy (T pouch), subsequent revisions, and then in the success of my J. I'm a week behind Caty's surgery date, and significantly behind in healing because of the adrenal insufficiency setback and rehospitalizations since my ileo surgery. BUT I'm eating everything, have no pain, spend no time in the bathroom, am full of energy for life once again, and feel like I've regained my zest and vitality. I go to a pilates class, ahve resumed harp lessons, and travel long distance for body work and acupuncture every ten days. Hiking, entertaining, cooking, partying are back on my schedule. I CAN have the life I envisioned with the J, and it's not the only solution for me. Indeed, it was, in the end, completely unworkable. I am working on improving vaginal atrophy so I can resume a sexual life with my husband who's been a saint of support throughout the five years. In short, EVERYTHING is better, much better for me with a permanent ileo, but I recognize the need to explore all options first, and to be really certain that giving up the J is the best solution for you. It's so personal, and I was ambivalent until the day before my j removal, although leaning in that direction. Good luck with your careful thinking on it.

Well I have to chime in here having suffered with my fistula for quite some time - 3 years in fact. I had stool discharge from the very beginning but it was infrequent. After 1 1/2 years of putting it off I went to CC and had both medical and surgical therapy for over a year before my surgeon said I should stop trying to fix it and let him remove my pouch. I was DEVASTATED by his frank opinion of my best option. I am only 28 and am very happily married. Thankfully my husband too has been very understanding of the lack of sexual activity but the idea of going to the bag permanently (I had a temp ileo done to help relieve me of my suffering with the fistula) was killer. In the end I opted to get a kock pouch and I'm very very happy I did. I've had my j-pouch removed and a complete proctectomy and life is so much better now!

I kept putting it off and putting it off because i wanted so desperately to be normal. In the end it was something my surgeon said to me when we first embarked on our journey to fix it and that was "don't suffer needlessly"
I took a good long look at my life and all the sacrifices I had made to stay "normal" and realized my life was about as far from normal as it could be.

Unfortunately Caty is right and if you read the studies LONG TERM closure of a pouch-vaginal fistula is less than 50% Several women on this site have had closure for a while only to have it return.

I agree with Barbara whole-heartedly though, you should explore your options and try everything within reason. Another thing my surgeon said to me was "I want us to both feel like we gave this 100% or we'll have regrets" Once we crossed that it was time to move on.
I'm glad I did (even at 28) and I hope my story helps you other fistula sufferers out a little.

--
katie

Thanks so much for everyone's input. I think the major problem I have is that my doc's opinion that I should have my j-pouch removed is based on lack of experience more than anything. I have seen two surgeons and the top specialist where I live, and combined they have seen 1 graciloplasty, 5 fibrin glue closures, and a handful of immunosuppressant related closures. They are therefore reluctant to try any of those procedures on me.
In addition, everything else about my pouch is great - I can eat anything and everything, I travel a lot, everything is "normal" apart from these fistulas. I dont usually take antibiotics, but since being on cipro and flagyl I am only going twice a day, and not at all at night, so hopefully my fistulas are having a bit of a rest. I am very reluctant to go on infliximab, which they say is the next step for me before pouch removal. I will also discuss the koch-pouch as that seems a preferable option to an ileostomy.
xx