Hello,
Has anyone undergone surgery to remove fistulas ? The remicade treatment for my fistulas seems to have closed them over (well until next infusion). My surgeon says he will attempt to remove the fistulas completely HOWEVER there is a risk that this will damage the muscles and mean i will be incontinent and unable to have loop ileo reversed.

Has anyone had this type of surgery? Has it worked ? Were you able to have functioning pouch ? Were there any other problems ? If it didn't work what happened ?

I am beginning to freak out at the thought of even more surgery as they seem to go wrong

Hi

I can't answer your question but thought it would be interesting to compare notes. I'm also in the UK and have a pouch vaginal fistula. I've just been to the John Radcliffe Hospital in Oxford for a second opinion on my fistula and basically the options seem to be:
a) Remicade to try to close it (nothing was mentioned about surgery following this option)
b) a temporary ileo to see if the fistula heals (not a high % chance of success though), or
c) pouch removal (seems like taking a sledgehammer to crack a walnut when I think of the relatively small area of my body that is affected.)
The surgeon I saw felt that my symptoms were highly indicative of Crohn's, although previous investigations have always concluded that I have UC. So I guess your diagnosis will influence what options are open to you.

The only treatment I have currently is a seton stitch, and occasional use of antibiotics when I have a flare up. I'm never sure whether these flares are a return of the abscess that caused the fistula, or localised pouchitis/cuffitis.

I'm due to see my own surgeon again on 15th January to discuss options further, The advice given to me in Oxford was that as I am relatively well at the moment I don't need to rush into anything. However I'm not sure I can bear another summer of leakage and not being able to swim, enjoy the beach etc. I'm not too keen on the Remicade from what I've read - I seem to be very sensitive to alot of drugs and had Cipro triggered severe arthritis though last summer - so I'm not sure I want to go down that route. I'd be interested to find out how you found taking it though. As for surgery due to adhesions a temporary ileo would require major surgery so my feeling at the moment is that I'd go for the removal option. I have alot of concerns about that too - I'm more worried about complications than an end ileo as my experience of the end one after my colectomy was pretty good on the whole.

Sorry to go on so much, and sorry I can't actually help with your query - I hope someone else can though!

I encourage both of you to go to the Women's health section on this site and look at the post titled "Fistula Gals wontcha come out" - there is a slew of information there that should hopefully offer some advice.

good luck

Thanks Lisa , I didn't feel the posts answered my question as have never heard of fistula REMOVAL surgery were the pouch is left but the fistulas are removed. So was hoping someone would have had experience of this specifically and could help as I am really worried & confused about what happens.

Alison - I had seton sutures in for about 18 months, initial antibiotic treatment and got loop ileo but since the fistulas didn't heal on their own - it was thought it was Crohns (biopsis were indeterminate) and so eventually they started me on remicade which seems to have stopped them draining but it starts again before the next infusion and apparantly you are only allowed so many remicade treatments as they are unsure of the long term affects. I don't know if that helps you - to be honest I get the impression that doctors know as much as we do about these nasty fistulas and there doesn't seem to be a definitive cure as each patient is different, so hope your treatments work for you.

My situation is a bit differen from yours, but I am going to have repair surgery on my fistula early next year.

My fistula is right near where the pouch is sewn onto what is left of my anal muscles. Because of the location my doctor can go in through the rear end and pull tissue over the hole and sew it up. Tried this in October and it failed. Got a temp ileo now, so he thinks we might have more success this time. He wants to try a few times (if it failes) before cutting me open fixing the fistula and redoing my pouch. I have had a drain stuck through my cheek to drain the abcess behind the fistula since Sept, and I'll probably have it in all winter.

Like I said, my situation is a bit different because of the location.

Hi Big D
Wish you all the best for your surgery.
I am very confused as to whether the removal / repair is the same thing? I was hoping someone could help, as am having alot of problems coping and don't know what my best option would be.

Best wishes

The repair surgery is what you're referring to. You can't really "remove" a fistula....it's an opening (commonly between two organs) that isn't normally supposed to be there. Repair surgeries usually involve trying to close it up using various methods. Remicade, fistula plug, fibrin glue, etc. There's quite a bit of information on fistulas under the women's section of this forum. The thread is called "fistula gals wontcha come out tonight". Hope that may be of some help.

Thanks Michelle,
I am just confused as my surgeon did use the word remove not repair (am currently on remicade, its definitely not a plug or glue). As he said it could damage the sphincter muscles it seemed to suggest cutting tissue out. I feel stupid for not asking more about it so hoped someone here had had this procedure?

I would definitely question your surgeon further about it....this is someone that will be cutting into your body!!! You should know exactly what's going to happen before he operates. This stuff is confusing even to doctors themselves...my father has been a physician for over 25 years and I had to clear him up on exactly what fistulas were. It's just not something the average doc sees very often.

Hi Everyone!

Currently, I have a temp. ostomy and was supposed to be closed up in March 08. I developed a fistula after my 2nd surgery in Jan. 07. Since then they have tried the plug to repair the fistula - which I passed 5 days later. Just last Wed. my surgeon at the Mayo in Phoenix tried the "flap." Everything looks promising - but a few days ago I noticed leakage. Is this normal? Of course it is July 4th weekend here in the States and all hospital offices are closed! I am so scared and nervous - I hate my ostomy and want my life back! The only thing holding me up is this nasty little fisutla...we can put a man on the moon - but they can't repair a tiny F@#%ing hole in my body? Can anyone provide an answer on flap repair surgery? What if this isn't normal, what is next?

Thanks!