how hard to fight?

I don't have a lot to add, but won't you have to deal with the fistula in any case?

Scott, yes, that's partly why the op for a perm ileo is more difficult than I thought. I thought they could just snip the loop that I have and make it a perm, but was I ever wrong! They have to excavate out any infection/unhealthy tissue from the fistula site and put a patch in place. Then then have to remove my pouch and re-arrange my uterus to "fill" the void in my abdomen, then make the end ileo. At that point, even if the fistula patch doesn't fully close, I won't have more problems with it because there won't be any more fecal matter going that direction; literally a closed case.

I could also opt not to do either surgery and just live with the fistula, but -- besides the fact I would be doing that AMA -- I have opted not to take that route due to a variety of factors including the almost-constant infections I've been dealing with for almost 4 years. Fistulas are well and truly awful.

Gin

Gin, it appears that there is no easy road given your situation. Like you, my J pouch was healthy, but severe dysplasia further down made removal necessary. If things had been different, I would have struggled to keep my pouch, but that is my personal opinion. I strongly considered quality of life issues and opted for a BCIR (very similar to a Koch pouch). The surgery was difficult, but recovery progressed well and produced the results I had hoped for. I don’t know if this option is available for you in the Netherlands, but it would be a good question to ask your surgeons. I wish you the best with whatever you decide to do.

Bill

Hi Gin,
So sorry that this is not getting any better for you.
Yes, I agree that it is a quality of life question. I am a fighter (in spite of the fact that I too am so sick of surgeries)...I have given my all to keep my pouch knowing, that for me, an end ileo is not an option at all (skin breakdown, allergies to all adhesives etc) so I fight to keep my pouch healthy and alive.
But this fistula business is a real pain. Can't they do a temp ileo diversion, fix the fistula and then reconnect you? It would give the zone a chance to heal, give your poor little body a much needed break and then they could reconnect you to your healthy pouch once and for all.
It is still 2 surgeries, but so much smaller ones than a huge pouch removal etc. They can scrape and patch your fistula that way and not worry about contamination.
Just a thought.
Yes, a k pouch is also a possibility. Because your pouch is healthy they do not need to build you a new one, they just cut a part of your small bowel to create the valve (no it is not as simple as it sounds!) and open up a stoma on your abdomen with it. At least they wouldn't need to build you a new pouch, just divert it up.
There is never an easy fix for a fistula and the possibilites are not that numerous.
Discuss the 3 choices with your surgeon and try for the one that is easiest on your body with the best possible results.
Hope that you are ok otherwise.
Take care
Sharon

Gin, I feel for you and this decision you're faced with. If only we had a crystal ball regarding "fixes" to fistulas, jpouches, etc....

My surgeon told me the potential surgical options (pouch re-do or removal) would not necessarily guarantee an end to my RV fistula; however, your explanation of no more fecal matter going through it, thus "ending" the fistula, makes me rethink my surgeon's statement...

I do believe that if my surgeon absolutely guaranteed that my evil fistula would DIE were I to have my pouch removed, I would more seriously consider going to permanent ostomy. Like you, my jpouch has been working well - making this decision so much more difficult.

I know this isn't much help to your decision-making, but want you to know I share your pain and feel for you.

Hi Gin,
I also have an RV fistula (for 7 years now) with an otherwise almost perfect pouch. Like the previous poster, my surgeon says she can 'attempt' a fix, but they don't come with guarantees, and I may end up with a permanent ostomy even after a fight. I guess you have to be prepared for the worst and pray for the best. At 49 years old, I'm hanging on to what I know. I don't have a seton, so I try my best to ignore my fistula.
Maybe my post hasn't helped you - but thought it might help to know that you are not alone.
Good luck with your decision. I know you'll keep us posted.

Thanks, all. I know you can't make the decision for me, but sometimes it helps to process it through with others.

Sharon, the fistula repair they are suggesting is a muscle graft (I have my choice of three kinds), and that will be done with a temp stoma as you suggest. I'm not a candidate for any "lesser" repair as 3 of these have already failed and they don't do setons here. My infection rate with the stupid fistula is quite high (almost constant rotation of yeast, bladder, and UT infections for 4 years now) and right now I have a low-grade internal infection at the fistula site which is resulting in exhaustion and some pain. I simply can't go on too much longer like this!

I thought I could just attempt to live with the fistula and deal with the infections, but as they have only increased and I've now been dealing with this stupid infection since November, that doesn't seem too feasible in the long run.

Of course, if the graft fails, I'll end up with the permanent ileo anyway. So I'm really choosing between 2 surgeries (graft & reversal) with a possibility of a third (perm ileo if graft fails), and 1 surgery (perm ileo) but losing my pouch.

Not fun, not that any of this ever is for anybody.

Gin

Setons were described by Hippocrates. I'm surprised they haven't made it to the Netherlands yet.

Scott,
European medicine is very different from North American medicine is so many ways. I have been in and to hospitals all over the world and I can tell you that there is no comparison.
They are controlled by a whole set of rules that do not govern us back home. Especially where social medicine is concerned. Here is France the surgeons are still fighting to overturn the 'list'. The list is a 'comprensive list of surgeries' that are accepted by the French social health system. If your surgery is not 'on the list' then the surgery does not exisist.
I came across that with my K pouch. According to my surgeon at the time the k pouch did not exisit. But I have one...he refused to accept that and would not help me.
Gin,
Are they suggesting a gracilis muscle flap? I know that many places do them for fistulas, anal reconstruction and for other reasons. It is a very hard surgery and should not be undertaken lightly.
Have they tried to work on reinforcing your immune system? Maybe if they can help your body to fight the infections things would be better.
I only hope that whatever you decide that it gives you back your life.
Hugs
Sharon

Ha! Trust me, setons have "made it" here! However, they don't use them because they view them as having too negative an effect on quality of life; their preference is to aggressively treat the fistula. (I won't repeat what my surgeon actually referred to them as, but it had me crying I was laughing so hard...)

I have to say, as much as I've been through, I'm in the right place; the Academische Ziekenhuis Maastricht (the hospital here) is a teaching hospital and is renowned for its work in surgical treatments for fistulas. As a matter of fact, the gracilis muscle flap repair was pioneered here!

Sharon, I've been given 4 graft options: a labial muscular graft (not recommended & would be sent to a different hospital for that if I opt for it, which I won't), a gracilis muscle flap (surgeon's last choice), an abdominus rectus flap (surgeon's second choice), and a "fat graft" -- I can't remember what it's called, but it's a graft using the fat layer from around the stomach. This would be my surgeon's first choice, but I might not have enough to use due to previous surgeries. So she is recommending -- if I choose to have a graft -- to look at the fat layer & use it if possible; if not enough is found, then switch to the abdominus rectus (as I'll be open in the right place anyway). I've been warned this is also a painful and difficult surgery.

Or I can opt for the perm ileo... Although this isn't as easy a surgery as I thought it would be either, and my pouch, as I've said, is totally healthy...

Really, really stinks. Having a hard time fighting the depression this time around.

My immune system; yes, my internist (who works in conjunction with my surgeon) has been on top of this. Unfortunately, the yeast infections & the current infection are directly related to the stupid presence of the stupid fistula. Nothing will get rid of them other than getting rid of the fistula.

I absolutely HATE fistulas!

Gin

Good luck, Gin. I was, of course, kidding about setons, and it sounds like you're in the right place for fistula surgery if you feel ready to take that step (which may be more important than whether your surgeon is ready). A seton is much more conservative, but seems to just give some relief rather than reasonable hope for resolution. FWIW, there seems to be a huge difference between cutting setons and draining setons, with the former being rather brutal.

Yep, I hear you Scott. I did ask about a seton, but as they're not common here I figured it would be harder to get the continuous care... My preference, outside of waving a magic wand and having it all go away, is to the least necessary to just get on with life.

Unfortunately, it doesn't seem like there really is a "least" option -- and you hit the nail on the head about ME being ready to take the step. I just don't know and am waffling. Right now I guess I'm holding off until I see this IBD specialist in Amsterdam I've been referred to. After I get his thoughts I'll have to get down to it and make a decision.

Thanks everyone for the support, especially when I know so many of you are dealing with your own issues!

Gin

One of the issues with the surgical repairs of fistulae is that they seem to have a failure rate that's higher than seems reasonable for such difficult surgery. No surgery has a guaranteed result, of course. I'd suggest asking the surgeon what fraction of patients have excellent outcomes, and what fraction have poor outcomes. It will still be hard to decide, in all likelihood, but at least you won't get surprised.

Exactly! This is part of what has me so nervous.

Plus, I don't have the greatest track record: with the mesh repair they attempted on me, I was one of the first 10 women they tested it on. The other 9 are now fistula free, with no problems. I'm the problem child!

My surgeon in Canada actually wrote the following across the front of my records: "If something weird is going to happen, it will happen to this patient."

Guess it's nice to be known for something.

Gin

Sorry Ginlynn, I'm one of those patients too.
Your not alone. I hope things work out for you

Hi there, I was in your position in 2011. I went through numerous tries to fix my fistula but nothing worked. I had setons, plugs, temp ileo to let it heal, and nothing worked. After having the temp ileo for 8 months my hubby and I decided to go ahead with the permanent ileostomy. Honestly, since I had my first takedown, I'd never really been healthy. The ostomy just seemed to be the best option for both of us. I'm happy to say that 2013 was the first year since 2003 that I haven't had a surgery or procedure of one type or another. Here's to continuing that into the future!
Best of luck
Elaine

PS The fistula is closed/dried up/gone

Elaine:

So glad to hear you've had a positive outcome! My surgeon has said right from the start that choosing an end ileo will give me my life back with no more problems, so it certainly is tempting. Understanding that nothing, of course, is guaranteed!

Gin

GinLin, I just read your post and I feel as if you have simply taken all the words and descriptions out of my life and wrote them down; or I was cloned without my knowledge. If you can, please update on what you have decided.

Hey, I chose to have a pouch advancement. Week 6 post-op tomorrow; it's been rough, but there is no sign of the fistula at all. This was an alternative to a muscle graft suggested by an outside surgeon. He specializes in these kind of surgeries, works with pouches A LOT (top guy in the NL, one of top guys in all of Western Europe), and has had success with this before in an almost exact situation.

Not a typical solution, but I finally decided it was worth one last shot.

Gin