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

Hi! 

I’ve self diagnosed myself after observing the ”signs “ for over a year.  Since it’s not problematic or making me ill, I want to leave it alone also.  Have you found any alternative medicine to perhaps close this on its own?  

Thank you ! 

Jennifer 

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!

Hey Gremlin, I know this post is a couple of years old, I was just wondering if you're still around and how you're doing now?

My situation and feelings about it are very similar to yours, I've been struggling with my fistula for about 2yrs now and it's still getting worse. The psychological side effects of a complication like this are almost as bad as the physical ones and like you, I've had real trouble trying to talk to anyone about it in detail. Anytime I have actually tried no one seems to understand how devastating it is or how severe the symptoms really are so I stopped trying in the end...

Anyway.. I hope you're doing well and that you managed to figure out a path through this that you're comfortable with.

Take Care, FF

Hello,

People deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  In 2007 after 16 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent end ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband.  The ET nurse and I found the perfect spot together.

If a person is working with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm almost 69 now and life couldn't be better.  My husband and I are finally able to travel and have had lots of fun in our retirement.  He was my rock while I was ill.  Our lives are no longer on hold.  My ileostomy is 14 years old.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.

Caty