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Hi I've had my jpouch for almost 12 years with minamal problems. Sept 1st I was hospitalized for a abcess a ishorectal and a perianal.. The ishorectal had a draining tube and the other was packed.The perianal is not healing it keeps discharging.. Today my surgeon mentioned possible fistula and now I am very confused and would appreciate anyone who can give me advice on this..
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R u on any antibiotics? I think that can happen, an abscess can turn into a fistula. It is my understanding that the fistula is started from fluid try to drain out of your body any way it can. Thus making its own path.
I feel your pain because I have been there. It takes time to heal. Have u tried sits baths?
Maybe Jan has some insite!
Yeah, fistulas generally begin where this infection or fluid build up. The difference between a draining abscess and a fistula, is that the fistula is lined with epithelium (similar to skin). It implies something that has been there a while, since it takes time to develop. A fistula is more of a problem because the body senses it as something that belongs there, so it does not heal up like a wound, or an abscess.

If the fistula is not associated with an infection or the anastomosis site (where the pouch joins the anus), there is the concern this is related to a Crohn's diagnosis. Perianal/perirectal disease also is associated with Crohn's, but these complications can also be just due to the surgery and possibly reduced blood flow because of the surgery.

In the meantime while this is being sorted out, hot sitz baths are your best bet. They improve circulation to hasten healing, plus they keep the exit wound open, so they can heal from the inside out. This is the only way for them to heal without new abscesses forming.

Hopefully, your doctor will explain this fully when you ask him to.

Jan Smiler
Thanks so much for responding!!! I am doing sitz baths 3 to 4 times a day.My surgeon is great but so busy and I am worried because he is seeing me in 5 weeks..is there a way Jan to know for sure if its a fistula? I had a scope done at the end of October and everything looked great.Besides this abcess draining every 3 weeks I have no pain just a little soreness..Thanks trying to stay positive!!
No, you don't know if it has fistulized without really looking in there. And, knowing if it is would not change the treatment anyway. Basically, just keep it open until it is all filled in from the inside. The lack of pain is a very good sign that you are doing the right thing. As annoying as the drainage is, it is a good thing.

Jan Smiler
Not sure what you mean by untreated, since it was surgically drained. Antibiotics really don't do much, unless you are having other symptoms. But, you should be having constant (or at least daily) drainage. The intermittent drainage means that the pocket is sealing off, building up, then draining. This does not promote healing, only the continuous drainage does. You need it to drain all the time, and that way, it can heal from the inside.

It is possible that you need a wider incision to keep it draining. What does your doctor say? Have you had any imaging to see how far this goes or if there are any new pockets in there?

Jan Smiler
Thanks for replying.By untreated my doctor is taking a wait and see approach. It does not drain everyday it seems to be on a 3 week cycle.My doctor said it could be a fistula,another operation is risky because its so close to the sphincter.By not doing anything can it get worse? I am in no pain and before it drains its a little sore.I had a cats can done before the operation but not since.
It could get worse, sure, but that could happen even if they did surgery. If you can put up with it, conservative approach is usually best, even if it never heals. Sounds like you are doing all you can to keep it draining. At some point, you'd probably want another CT scan to see how things are going. Scopes won't tell much.

Pain is the usual guideline that the abscess is reforming and is blocked.

Jan Smiler
Today I saw my surgeon who did a check and told me there was no abscess or fistula..I was happy but confused because it's still discharging.. He said it will do that but it's clean and he wants to see me in 3 weeks.Is that normal for a abscess to just remain open and clean? I am in the tub 3 to 4 times a day and can't live without my heating pad.. am I able to breath and relax now?
Hi gina, This sounds like me, I sit in thebathtub as hot as i can stand it and i also cant live without my heating pad, It almost seems like nothing will help the pain i feel, Tehy havent found a fistula with me either but I am having stool and gas coming from me somwhere down below, I am so raw and irratated and now i have something that has formed over my uretha and its causing me not to be able to pee correctly, I have a uti and am on antibiotics, I am so confused because i have 3 ct scans and one they put the contrasts drink directly into my stoma so they could see if there wasa hole in my small bowel somewhere but there wasnt enuff contrast i dont guess, i am really getting afraid because i went 3 days without eating because of severe anxiety/panic attacks and there was no gas or stool then, as soon as i started to eat again , that night i started with the pain and the gas and then came the stool back again, i know this is what i have but noone will look any further to find it, I am going to roanoke next week to a new place and hopefully she will find it, dont give up, if you think that you have this keep going to different drs until someone finds it, a woman told me they didnt find hers for months but they did find it, anyways please keep us updated on whats going on, take care, hugs to you , becky
oh Becky. I am so sorry you are going through all of this. It definitely sounds like you have a fistula.
I don't know what insurance you have.. but you are correct, you need to keep hunting until you find a doctor that will help you. Can you do more research and tell the doctors exactly what tests you need? Have you had a perlvic MRI?

Also - any possible way you can get to the cleveland clinic in ohio? I am sure they would figure this out quickly for you. If you cannot get there due to insurance reasons, can you maybe do the online consult and send them all of your tests thus far? Maybe they can guide you on what additional tests you need to ask for for.
Have you been to UVA? That is supposed to be a good medical center. I went to school at VA tech and worked in charlottesville.

There are others on here that have dealt with this.. maybe they can tell you what exact tests finally found the problems for them. NancyAnn n/a in particular I think.

Don't give up. You know what is wrong. You just have to find doctors that will help you. I am so sorry you have to go through this in addition to being sick.
best wishes.
liz.
Becky, it does sound like a fistula. I'm not sure if you're seeing a GI or have seen your surgeon as well, but - a good colo-rectal surgeon is who you want to see.

My pouch-vaginal fistula was found via MRI after what I thought was an abscess developed. It's my understanding after much reading on fistulas that EUAs are actually the best way of finding a fistula and its path. An EUA is basically a super-scope done while you're under general anesthesia.

In the meanwhile, I'd continue with the sitz baths and use a barrier cream to prevent the drainage from causing such irritation. I use calmoseptine - if this is too tingly at this point, there's always desitin, etc.

Ginabello, not sure about why you're still discharging if there's no abscess or fistula. I'd follow Jan's advice - keep it draining via sitz baths. I've had my fistula 2 years now and even though there's a seton in it keeping it open and draining, I still take those sitz baths. I like using a handful of epsom salts in the water as well.

Best of luck to you both - pm me if you'd like more details...
Hi Becky I hope you get answers soon it is so difficult to always question what the doctors think. I feel great most of the time but like clock work every 4 to 5 weeks it starts to get sore and drain..I think I am going to go to the Mayo clinic I think I need answers and from what I read on this site they may just do that for me.. I am afraid that something is going on and my doctor says its fine . Please let me know how things go for you..

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