RV fistula help

Hi,
I feel for you. Fistulas are not fun. I had one, but had it repaired. So far so good. I would recommend doing a search on this site. There have been a ton of posts about this topic. Or you can PM me and I would be happy to share my experience. Best of luck!

Colleen

Hi,
Sorry to hear it.... I could've written the exact same post 2 years ago! I was put on antibiotics immediately and the darned thing calmed down (had it lanced once). It's closed off now and dormant. I wanted to have it surgically removed but no doctor would do it... I take an antibiotic everyday and feel better than I've ever felt because the pouchitis is very quiet. It's lovely. I'm married to a doctor and was seen to immediately at all times. The fistula shouldn't be allowed to establish itself... I wish you didn't have to wait for the doctor's appt. Are you taking anything at the moment? I never had feces coming out of the tiny hole, just puss, and maybe at its acute stage (the beginning) some yellower puss. But the antibiotic quietened it down. My diagnosis is now Crohns, though that's arguable as well. The biologicals (Humira, Remicade) will make it go away I believe, but only while you're on them. My professors (St. Marks Hospital, UK - where the pouch was invented) advised against the biologicals calling them "poison". I'm fine now and my sex life is fine too. I hope this helps.
Good Luck!
Colleen, how long has it been since your surgery?
Tami

Hi, I know exactly how you feel, the exact same thing has happened to me! Started as a bartholin cyst and developed into a RV fistula. Was one of worst days of my life when i figured out what was going on. I haven't had anything done to it, my surgeon has just checked it out so we know what we are dealing with, and have discussed all the options, its quite managable atm so I'm not planing on doing anything drastic. It is quite small and I'm finding is getting less and less annoying as time goes on. I still have bad days but sometimes I find myself sorta forgetting about it which I never thought would happen. It's the uncertainty that gets to me, not knowing what's going to happen. Anyway, feel free to pm me if u want to ask me anything goodluck, we all need it lol

Lou

LouLou, how long have you been living with your fistula? I have had one nearly 2 years, had a seton put in last June, and am in a holding pattern. I take augmentim 500 mg every other day, and doing fine, although there is still a bit of a greenish discharge, so some sort of infection still in there. Kinda wish I hadn't had the seton put in, however - I think I could have managed OK without it. The seton limits marital relations.

vstRN, so sorry you're going through this. Although mine did not start with a bartholin gland abscess, it did start with a labial abscess, if I understand these things correctly. Fistulas are terribly complicated, in my opinion. I've been given the option of a pouch re-do or pouch removal, neither of which appeals to me. The other viable option given to me was to just wait it out. So, as I said, in a holding pattern. PM me as well if you're interested in talking!

Thank you all so much ladies. I really appreciate all of your help. I think my fistula is more on the mild side as I have only seen tiny amounts of stool on occasion but I have constant draining and pus. GROSS. Also, my whole vaginal area has felt really swollen and irritated. I'm really interested to see what my surgeon will say. It's been going on since mid September but I never made the connection that it was a fistula. I don't want to do anything drastic but I really really want to take care of it and not deal have to deal with it anymore. Lou_Lou, I know, when I figured it out it was such a low moment....

I've had mine since April so only 8 months.. It doesn't sound like ur surgeon has given u many options, mine as gone through many some non invasive and some more of a big deal, currently I am not considering doing anything invasive, I know the chances are on the low side but if it can work for other people than why not us?

if it's mild and livable, MUCH better to leave it alone and not mess with it. That could make it worse and is probably not worth the risk fixing, imo.

I totally agree! I most certainly do not want to mess with it and risk damage to my j pouch, which is perfect and has been for 12 yrs! I am considering a fibrin glue option just to give it a try, I've herd of it eventually working for a couple of people so who knows, it doesn't require any slicing and dicing so its worth a try.

I agree as well, fq and Lou_Lou. It seems like if a repair DOES work, it takes at least a few attempts at it, and I'm not sure if they ever go away permanently, anyhow. And as long as it's relatively mild ... I can understand those having fistulas that are very difficult to live with making every effort to repair them, though.

I certainly am not happy to have this, but I too don't want to risk making anything worse by having surgery of any kind.

So I am going to have an EUA tomorrow and am so nervous. My surgeon seemed pretty concerned as to the reasoning behind why I developed the abscess or possibly, that I had developed the fistula first. I am so scared that I am going to come out with a crohns diagnosis and am not feeling too optimistic.

I don't know why ur surgeon is concerned if it was an absess, if the fistular formed on its own with no absess the Chrons diagnosis would be more likely, but because if came from a absess, it's most likely not Chrons. Well that's my understanding anyway, I'm not an expert though.. good luck x

Okay, well I survived today and am back home with a seton in. I guess the good news is is that there is no sign of crohns so that is off the table. My surgeon also discovered that I have some serious cuffitis going on. He offered me 3 options which I think are all terrible.

1) Pouch redo with diverting ileostomy. My thoughts on this are absolutely not, no way, not yet.
2) Try the plug approach which he is not crazy about since he says there is only a 60% chance of it working.
3) Do nothing and I guess stay miserable.

I'm pretty bummed.

That is good news! I'm not to sure what the plug does for cufitis? I guess 60% is a better chance than 0%, who knows you could be one of the lucky ones!

The plug would be for the fistula (I guess I forgot to mention that the rectovaginal fistula was confirmed). As for the cuffitis, I guess Canasa for now. I'll see my gi on Wednesday.

vstRN, I was given pretty much the same options. Just want to say that so far the seton itself has not given me any problems (except for limiting marital relations). It might not be quite as bad as it feels right now to wait things out. It may heal and at that point surgical options may be available. Yep, there are a lot of "maybes" there, but that's a fistula for you.

Best of luck to you.

Oh right yea I was a bit confused, yea I was given similar options including fibrin glue and some other options.. It's a pretty harsh blow but trust me u do move on.. :/ it ur fistular very active?

I haven't posted very much on this site but I figured this would be a good place to start since I had the exact same thing happen to me. I had an bartholin gland abscess that eventually cleared up after lancing (it took several months). Unfortunately, about 4 years later I got a fistula in the exact same place. I lived with it for a while since I didn't want to have more surgeries and my pouch was almost perfect otherwise. Eventually it bothered me enough to try the fibrin glue (didn't work at all!). When that failed I went to the surgeon that did my pouch in Seattle and tried a seton for several weeks (to clear up the infection) and then a plug. It ended up not working either but the fistula is much more mild than it was and usually only bothers me when I get a very upset pouch. So far I've had the thing for something like 6 years. If it gets really bad I might be willing to try to pouch diversion but I had a terrible time with my temporary ileostomy and hated every minute of it (I had mine for almost a year) and I don't know how I can miss that much work. I take some ibuprofen when my fistula gets inflamed and watch what I eat. Mostly it interferes with lots of sex with my husband I'm not sure I could stand having a seton for longer than a week or two. I can't imagine having sex with it in and mine cut into my bottom!