Hi everyone. I'm brand new here. In 2001, I had the two big surgeries - proctocolectomy with ileoanal anastomosis with loop ileostomy and then the take down surgery. My problem, among a few others, is that I developed a fistula, which at first more or less bahaved itself, but a few years ago, it decided to behave, well...badly. It also decided to grow an off-shoot. So I have one RV fistula, (I know, nice!) and then its sister branch comes to the surface of my skin near my anus. My Gastro thought Remicade infusions might help close the fistuals (because it has helped crohn's patients with fistulas) and so after quite a bit of back and forth on taking this biomed, I decided to try it. Now, despite having been infused 7 times over 9 months, the fistulas are not healing...at all. So I stopped the infusions. The suggestion from my gastro and now my surgeon is to go back in, make a new j-pouch, close off or cut out the 2 fistuas. And voila, I'm back to square one, healin' and dealin' once more. The fistulas were a biproduct of the surgery, we now believe, (not crohn's realated), so I'm a little apprehensive. I don't want to live this way anymore. Intimacy is impossible. My husband is so kind and understanding, thank you, but I guess it's more about how I feel about myself and my body. This has been going on for 4 long years now. Has anyone or is anyone suffering the same kind of problem I am? I worry about absorption of nutrients when even more of my small intestine will be gone. I worry about infections and absesses and always having to be on Flagyl and Cipro and I am upset that my sexuality is way far back on the back burner. I know this reconstruction is my only real option. Has anyone had a second j-pouch surgery? Any thoughts? Thanks so much. This is such a great site. Funny too.

This message has been edited. Last edited by: HappyLilly,

HappyLilly,

I had a second j-pouch done due to a leak in the first one. I also had abscesses & 2 fistulas, but they were not located as low as yours. One drained out my abdominal incision, & the other one was higher up, between loops of bowel & was not discovered until the j-pouch re-construction surgery.

It's been 15 months since my second take-down surgery. I have no problems with absorption of nutrients. The fistulas and abscesses have not re-occurred and I take no antibiotics. As far as I know, I have never had pouchitis.

I wish you good luck whatever you decide!

Anjuli

Hi Happy...

Do you how they determined that your fistula was surgery related instead of Crohns related. I'm dealing with one I have had 3 surgeries on and it recently started leaking again. They say mine is Crohns related...but I'm always suspicious...?

During the fistula surgeries...my libido wasn't even on the stove, in the frige was more like it.

Thanks...

This message has been edited. Last edited by: Cataja,

Hi Happylilly, I too have a dreaded r/v fistula so know exactly how you're feeling about yourself. I've had it for about 4 years now and tried remicade/flagyl/cipro/fistula plug suregery to try and fix it, but no luck. I'm going in for an exam under anaestheic Feb 23. They are trying to decide now whether I have UC or Crohn's. If it's Crohn's they said the only option is live with the fistula or permanent ostomy. If they decide it's still UC then they will try the Gracillus Muscle Sling surgery on me. My pouch is working perfectly which is the the real kick in the butt to this complication. Good luck with the pouch advancement. Elaine

Hello; I am in the same boat as you are HL. I have had my fistula now for 4 years and have tried anything I can to help myself, short of more surgery. Remicade & Humira both helped me but were not permanently successful. My surgeon is also suggesting pouch advancement w/ flap but I'm not thrilled with the idea. I think most days I just want to go back to my ostomy and go on. Similar to Elaine, my pouch works great too; every scope has been nearly perfect. So it's a real problem all around. I hate to lose my pouch. I also worry about more complications down the road but I keep telling myself to deal with one thing at a time. There is no crystal ball; no way to predict the future.
Elaine, there have been a couple of people here who have had successful gracilis surgery.

Wow! Who knew! It's so exciting to be connected with real people with the same real problems I am dealing with (women, of course). One tends to feel quite alone at times. I am not going to get the flap advancement done. It appears the stats on full and permanent recovery are not very good. What my surgeon is going to do is build me another j-pouch. He'll remove the existing pouch from which the fistula and its branch extends and we'll start all over again with a loop ileostomy for about 4 months, then a take-down, then infinite numbers of burning bowel movements!!! yay. It's been almost 10 years since the original surgeries and I have probably forgotten the real pain and discomfort associated with the healing process (kind of like labour), but you know what, I'm ready. Because the alternative is me, without a functioning (as in sexually) bottom half. I too, I think, would prefer a permanent ostomy to status quo. Have already thought about various ways to gussy it up, if something goes wrong and they have to give me a permanent one. I just want "it" back. I know, I know, I'm alive, I'm otherwise healthy and happy. But you get it, right? Gracilis surgery? And omg, I forgot to wish you all good luck too! I wish I could heal everyone immediately....

Hi Guys...don't want to "rain"...but I'm having fistula problems and have gone back to an ileo. Other then the fistula life with the bag has been great!

Shelby,
Two things..if you could share. Where are your fistulas? And, what is a flap? SUe

I have a vaginal fistula.

•Transanal advancement flap repair - The best results have been reported with this type of repair. General, regional, or local anesthesia may be used. The patient is placed in the prone, flexed position with a hip roll in place; the buttocks are taped apart for exposure. The fistula is identified using the operating anoscope. A flap is outlined, extending at least 4 cm cephalad to the fistula, with the base of the flap twice the width of the apex to allow adequate blood supply to the flap tip. Local anesthetic with epinephrine is injected submucosally to facilitate raising the flap and to diminish bleeding.

The flap, consisting of mucosa and submucosa, is raised; some surgeons include circular muscle as well. Meticulous hemostasis is imperative. The fistula tract is curetted gently. Circular muscle is closed over the fistula. The tip of the flap, which includes the fistula opening, is excised. The flap is sutured in place with simple interrupted, absorbable sutures, effectively closing the rectal opening of the fistula. The vaginal side of the fistula is left open for drainage. This approach separates the suture line from the fistula site and interposes healthy muscle between the rectal and vaginal walls. Proponents point out that the relatively high pressure within the rectum serves to buttress the repair, in contrast to a transvaginal repair, in which the intrarectal pressure is more prone to disrupt the repair. If indicated, sphincteroplasty can be performed concomitantly.
http://emedicine.medscape.com/...cle/193277-treatment
More;
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2467399/
This is interesting;
http://synapse.koreamed.org/Sy...9JKSC/jksc-23-10.pdf

Cat, how does your fistula behave with your ostomy? I am concerned that I will still have leakage or increased leakage even with the ostomy.

Wow! Are you in the medical field. That was hard for me to follow I really hope it works for you...I'm watching and trying to learn. This crohns disease is just a pain and emotionally draining!!! S

Shelby, I guess what I am getting at...I'm not sure if you know or someone else does, but do they treat fistulas or abcesses differently because they are in the pouch? S

Hi Sue, I'm sorry that was difficult to comprehend; yes, I am a RN, but to be honest I skip over the really big terms/details and extract the info I need! The reason I posted that excerpt was so you could read the specific info you asked about. But, yes, I understand it is not in layman's terms and I forget. Basically, I believe it is explaining how they create the flap from the healthy mucosa/muscle and suture it in place on the rectal side of the fistula, as opposed to the vagina (effectively leaving the fistula tract there but closed off.)

I think there are preferred methods of treating the different types of fistulas. Even though many girls here have "vaginal fistulas", they aren't necessarily in the same spot (anal/rectal or pouch) or track exactly the same. For example, mine is cork-screw in nature, meaning it is jagged and not straight. The outcome can depend upon whether you have Crohn's as I am sure you are realizing. I think that is possibly the biggest difference when it comes to achieving a successful repair.
It's important to ask where your fistula tracts from. That way you can discuss your options as far as repair style and outcome, as well as do your own research if you choose.
I hope that helps and didn't confuse you more (And I hope my info is correct -- I am tired.)

Shelby,

Read your post regarding fistulas and the advancement flap procedure. I had a rv fistula develop after a rectocele repair. (10 days apart).

After the flap surgery, I have been in constant pain, I told the nurse and doctor when I came up from surgery that the pain was excruciating, they said it would go away, well it hasn't. I can't sit, my butt just THROBS constantly, I don't empty completely, due to the tapered rectal canal as a result of the surgery. Had a defagram done. Something pulls in side of the rectum and is pulling on the anal opening. I have gone to several doctors regarding the pain, all they tell me to do is to go to pain management. The pain meds (neurotnin) is not working and I dont want to be on meds either. My question is should I be in this much pain after 3 years? Can this flap procedure be redone? Could it be damage to the nerve? No one can give me an answer or they don't want to. No one wants to go in and re do it. I just want my quality of life back.

Waiting to hear from you.

Elaine - hurting

Hi Elaine, I'm sorry I missed your post. I don't know a whole lot about the flap repair surgery, as far as the dirty details go. No, you should not be in this much pain three years out and someone should be willing to listen and help you. I think you are correct in your assumptions that it could be some kind of damage that resulted either during or after the surgery but it is difficult to know for sure why this happened. I imagine that you were examined after surgery on multiple occasions since you are still taking neurontin that requires a prescription? I don't think you should be left on pain medication without any other options or solutions. I wonder if you have an anal stricture?
Have you thought about seeking another opinion? Perhaps some place like Cleveland Clinic may not be very far for you to travel to. I am unsure if they can do more than one flap repair, but I'd guess that it is possible. However, I would have to assume that whoever does the surgery would want to find out exactly why you are still experiencing this pain, and perhaps have complete resolution before attempting anything at all.

I truly feel for you. It is difficult enough to deal with a vaginal fistula alone. I hope that helps, but I'm sorry I don't have any great answers for you.