Pouch-Vaginal Fistula

I hope someone can offer some advice or relay their experince of a Pouch-Vaginal Fistula.

I had my J-Pouch surgery in October 2015. All was fine until October 2017 when I had my first Pouchitis flare up. Ever since then I haven’t been ‘normal’. I have been leaking pus like discharge from my vagina for around 3 months now. This was originally diagnosed as a Bartholin’s Cyst but I’m sure it isn’t.

I have had an appointment today with a colorectal surgeon who has confirmed my concerns. He believes that I do have a PV Fistula and I am due an MRI scan to confirm this later on this week.

My worst fear is reverting back to an Ileostomy. I lived 8 months of hell with it prior to having my J-Pouch and the thought of living with one again doesn’t bear thinking about. My surgeon thinks that this will likely be the route, even if it is temporary. I have UC but he wonders whether I actually have Crohns now. I did have tests for CD prior to my pouch surgery and all confirmed it was UC at the time. 

I would be really grateful for any advice or hearing from anyone who has been through a similar situation and what the outcome was. 

 

Original Post

Your situation sounds almost identical to mine except that I was experiencing symptoms sooner following the jpouch surgery. I too was hopeful about the Bartholin's cyst but after marsupialization (?) the symptoms continued. I eventually got an MRI which confirmed two fistulas from the pouch - one to the vagina and the other seeming to go nowhere. It was thought that I had an undetected leak following the j pouch procedure which caused the fistulas.

I had a flap advancement surgery to try to close it off. Within a week it was apparent that it hadn't worked so I had a diverting loop ileostomy a few weeks later to try to let it heal with 'no activity down there'. I had to have a couple of ileostomy revisions and during one of those surgeries a second flap was performed. Ten months later the jpouch was attached as an investigation under anesthetic showed it had closed. However, I was disappointed (devastated) to say that it hadn't closed and stool is draining into the vagina. It also appears that the second one is also active now.

So, the questions of the surgeon are: do I have Crohn's even though every thing else points to a continued diagnosis of UC. Or, perhaps there is a branch(es) not showing up and the flap is not is the correct place. 

Anyway, the plan is now to try a trial of Humira to see if they will close (thus, yes it's Crohn's) or if they don't heal I will have a permanent ileostomy.

This is not to say that your situation would be the same. Yours may well heal and the ostomy is unnecessary or, at worst temporary. I too had ongoing hell with my ostomy. I'm told that loop ileostomies are more prone to problems so I'm hoping that an end would not be so problematic if that is indeed the route it has to go. I'm sure hoping that I don't go back to the ostomy but I'm not too keen on a new Crohn's diagnosis and being on Humira indefinitely. But again, yours may be one of the many that do heal with the surgery. I felt I had to try the flap at least and also I have to try the Humira as I don't want any more surgery and nor do I want to return to the bag. 

I would offer to send you luck but seems I don't have a lot of that. So I'll send you love instead.....

 

 

 

 

 

Hello, thanks for the reply, it good to see I’m not alone with this and I’m sorry to hear you’ve had a lot of bad luck with it.

It does appear that fistula’s are tricky to heal. My surgeon said I will likely have to at least have a temporary ileostomy if it is a fistula to allow the pouch to heal. Last time I had an end ileostomy but I would imagine this time it would be a loop. The thought of having to go through that healing process and relearn what food I can eat again is something of a nightmare. Other than the suspected fistula my pouch is usually functioning fine, I’ve had a few bouts of pouchitis recently but I usually enjoy a normal diet. 

I had an MRI last week and it showed no evidence of a fistula. My surgeon seemed confident it would show up on there and I think he believes I’m imagining things. I am due to have a further procedure under anaesthetic for them to look at this further but unfortunately with living in the UK I have to wait a long time for this as it will be done through the NHS. Seems if you don’t have cancer you fall to the bottom of the priority list in the NHS.

I am still convinced it’s a fistula. My pouch was irritated after an examination last week and was bleeding and this was also coming from my vagina. It stopped bleeding for a day and then started again and when it did start again the blood came from my vagina. That’s enough confirmation for me. 

It took a long time for my fistula to be diagnosed. (It's snail-paced in Canada as well but I'm grateful that it is paid for. I'd be bankrupt otherwise). 

I'm just going to throw this out there. I sometimes wish I had left well enough alone and just tried to manage the fistula. I've gone through so much since that first flap advancement repair.  Prior to attempting a repair it was not too bad if I kept the stool on the thicker side and didn't let the pouch get too full. There were periods of time when it would be very active but then it would seem to settle down again. Now not only am I back where I started but the fistula drains much consistently and much more stool into the vagina. The benefit of hindsight. Also,  I may not be accurate in my recollection of how it was. 

Hi

Im not sure if this helps but i actually have a diagnosed fistula which occured after a bartholin gland abscess. You would know if you had a bartholin gland cyst/abscess, the pain is excruciating. 

While it was devastating at the time, and it still gets me down from time to time now. My fistula is tiny and is now pretty much dormant. It will get irritated from time to time but i can deal with that. 

My surgeon did try a very non invasive procedure to try and fix it but that didnt work and so, i decided to leave it alone and see what happens. I just live with it now, unless something blows up with it and im forced to act i wont touch it. Unless some amazing technology comes or advances in medical science or something Im not game try anything else as i dont want to risk my pouch which still healthy otherwise and serves me as well as it always has. 

My fistula is a tiny tract, so early on it used to give me more pain but as time has gone on, it has settled down and only gets irritated when my stool is very watery and something slips through. Otherwsie its dormant so my advice is to assess the size and nature of your fistula. Dont rush into anything invasive unless ur forced to, ie constant uncontrollable leaking, pain etc. (Sorry im not sure what ur situation is presenting) but i just wanted to let you know there is hope.

 

Lou

 

 

 

 

Hello,

Sorry I haven’t replied sooner, in all honestly I’ve been trying to avoid the situation as much as possible as I find it difficult to face the realities of it. I tend to bury my head in the sand when I am struggling to cope.

By way of an update, I have had two filac laser procedures done to try and close the fistula. One in September and one on Monday just gone. Neither have been successful and both have left me with a lot of pain for some time afterwards (doses up on codeine now!).

My surgeon has said that the only thing to try is to redo my pouch completely and have a temporary Ileostomy again...problem with this is that because my fistula is so low (it’s essentially where the pouch joins) that my surgeon would need to try and avoid my sphincter muscles and that’s not guaranteed. If that is unsuccessful, I may end up with a permanent Ileostomy.

I really don’t know what to do. I’ve been unable to have intercourse for over a year now because of this and where it located so I can’t live like this forever. I can’t believe my boyfriend is still with me to be honest...he doesn’t know anything about the potential Ileostomy, I really feel that I can’t talk to him about it. Not because he won’t understand and I’m scared that he will break up with me but because I can’t fave the conversation as it makes it seem like a reality. 

My pouch is totally fine otherwise and I can eat pretty much anything. I really don’t want to lose it but I can’t live with this fistula. It’s so unfair. I don’t know what to do. 

Any further suggestions would be gratefully received!  

Hello!

I don't have any suggestions, just commiseration. I had a minor fistula that I lived with for about 10 years (my surgeon did not recommend intervention), until it spontaneously healed (no idea why)...for about 2 years. Unfortunately, when it recurred about 6 months ago, it was much worse and is causing me considerable grief. (Also chronic yeast infections--anyone else dealing with this?) I am also sort of avoiding dealing with this medically as I'm afraid the doctor will finally suggest surgery, and, like you, my pouch is otherwise working fine and I don't want to compromise that. But I don't know how much longer I can put up with this unpleasantness...

Though I can't offer any help, I have to say it was such a relief to discover this forum and find other people who have been going through the same thing! It's not something I tend to bring up in casual conversation with others...

Good luck!

Add Reply

Likes (0)
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×