Hey everyone,
I'm new to this site (and loving it and you all) and have a question re. a fistula that has just returned... ( was diagnosed w. UC but 3% indeterminate person...I don't want to have Chrone's...please).

Anyway, I just had a takedown first week of December. it's been pretty rough w. all night bathroom campouts. Then within 3 weeks of takedown I had symtoms of a rectovag fistula. I had this fistula once before after my first takedown, and after two attempts at repairing it (one vaginally and one thru the perineum) they decided to give me an loop ileostomy again to give it a chance to heal... so after 18 months of the 2nd 'bag from hell', i'm here now after the takedown in early december.

The fistula symptoms and the bathroom love-in stopped within 24hrs of going on the cipro and flagyl, then started again within 24 hrs of being done the 2 week dose.
I quickly asked for more cipro (and only cipro because in hospital my forearms- fingertips to elbows went tingly and numb, as well as a patch of my face...no one knew why- my gi guy and surgeon weren't around- but it happened w.in 10 minutes of a nurse coming in and speeding up my IV/antibiotic pump...now I wonder- was it due to flagyl??)

ok whoa- sorry i branched off there...arg...!
My first question is- now that I'm on the cipro the second time round, the ****es have slowed by a lot, but not as perfectly as the first dose a couple weeks ago...also, the fistula symtoms have eased a bit too, but also not as much as the first dose...

So- ...a.) should I try metro/flagyl w. the cipro as the two combined seemed to do me better...
and b.) my GI guy and surgeon have suggested sending me to Toronto's Mt.Sinai (there's a jpouch clinic there)...is that seeming extreme? It does to me after reading this site...maybe i'm not as bad off as they think???

Okay, I hope that was clear...I will check back tomorrow in hopes of some insight...
thanks,
and best of everything to everyone!

Hmmm...Welcome to the site. I'm new here as well. I can't offer advice on most of your symtoms. But I have had my share of campouts and bowelfests! I can say the flagl killed me as well. Tingly all over, passing out and other stuff. Stopped that right away. Research the site and someone will answer you! Wish I had a wand to help! Arthur

Hi dont know if I can be of much help accept to say I have dealt with the same problems as you for 15 years now -with UC and then with a j pouch ( and at various times a temp illeo to rest the pouch)and still the fistulure comes back - now it seems they thinks the best thing is a permanent illeo - honestly i am at that point where anything is better than what Ive been thru for the last 15 years.
The antibiotics for me dont seem to fix the problem just delay it coming to a head - I have been tested for food allergies and tried probiotics and other alternative products as well and this helped as long as i stuck to a very strigent diet.I looked and felt alot healthier but even then the fistulure has came back and noone seems to know why.
all in all I just wish you the best - dont give up and good luck.
thinking of you Lissie

I had a surly fistula that wouldn't heal and they tried numerous attempts at repairing it as well as the medicine. What they finally did for me was give me a bag temporairly and performed a graciloplasty which is where they take part of your leg and repair the hole with that. It was a brutal surgery with a long recovery time but it has worked for me. I had it 8 years ago and I've done fine ever since. They had a specialist plastic surgeon do it. I would ask about that and see if it's an option for you. Goodluck.

Hi everyone,
thanks for the replies- I'll look into the graciloplasty, though it sounds like a helluva thing to go through...but worth it too since it worked for you OO. How long was your recovery time? WAs it due to the stress they put on not moving much after the repair...? Or was it sheer pain making it take longer?

Lissie what are your plans then? Are you going to go for a permanent Ily? What kinds of dietary changes did you make that worked? Diet is the hardest thing to change I find- for a while w. UC i was on this crazy ground almond/use as flour alternative diet- no bread, pasta anything- it got very difficult very quickly, and didn't help much anyway...
thanks to all of you,
and good luck-

I am at Mount Sinai in Toronto and in Canada they are the best, I highly ecommend you go to them for a consultation. It is free since you are in Canada and is probably worth it before you go to a permanent ileo. But if you are just tired of all teh troubles maybe an ileo will give you a better life.

Hi Eric,
I'm waiting to hear from Mt. Sinai...I guess I'll go, as I'm not sure what else to do other than try immuran or something.
I am apparently going to be seeing a Dr. Greenberg. Do you know him/her?

To answer your questions about the recovery and pain from the graciloplasty...I had to lay on one side of my body for three days which was the hardest part because everything swells up and the blood sort of pools on that side of your body. I had an epideral, drainage tubes in my leg, an IV, and the bag on my stomach, oh and a catheder. How many other tubes could I have coming out of me?

I had to start physical therapy right away to keep my leg from drawing up where they cut me.
After I got home I could lay down or stand but could not sit for three weeks as it would cut off the blood supply. They keep tunnel part of your leg up to repair the fistula but they keep it connected to living tissue and they don't want you to cut off the blood supply why it's healing.

I was on a walker and then a cane for a few weeks. People used to stare at the 18 year old on her walker! So the whole recovery process was a few weeks. Then about three months later, I had my take down.

I've been fine ever since, the only thing I experience related to the graciloplasty is phantom pain in my "leg." When I hurt from going to the bathroom too often, or when I'm having an exam at the doctor's office, my "leg" hurts. This is because they left it connected to living tissue and my brain thinks it's still my leg even though its inside me. I'm also numb on the back of my leg where they cut me which can be a little tricky shaving

But I have gone on to live a healthy life and even got a Bachelor's Degree in dance. I'm so glad I had the surgery. What's years of health compared to a couple weeks of recovery?
Let me know if you decide to go that route and want to talk.

Thanks, that was a lot of good info. I'm assuming you had a very very skilled plastic surgeon, and/or a GI surgeon on hand for that kind of major surgery?
I'm seeing my GIguy in a week or so...I'll put it to him. THough the thought of going through all that at this point is a lot to comprehend...good for you for hangin' in and doing it. I'll definately be in touch with you post-appointment time.
Congratulations on your dance degree!
thanks again,
seffy.

You are correct: I had a wonderful plastic surgeon and my regular GI surgeon both there for the operation. I haven't had any problems recur since my surgery and I've been very happy with the results. Definitely keep me posted and PM me if you want to chat in more detail.

I had 2 fistula surgery repair surgeries for a R/V fistula in Mt Sinai in NY that didnt work but have now been on Remicade and 6MP with Cipro and it seems to be working. yes it may be Chrohns but at the end of the day it doesnt matter what they call it as long as they can fix it. Anyway just a suggestion to ask about the Remicade it really is working for me....Hope everything is OK. I know first hand how horrible fistulas can be...

Kim,
what were the two surgeries they tried? I had probably three different surgical attempts to repair my fistula before they went with the graciloplasty. Have you had that yet? If not, it could be an option if the medication stops working. I'm glad for your sake it is though.

I have had success with a plug procedure and remicade. The first plug attempt did not work but so far so good with the most recent repair. I have been on remicade for a couple of years and would recommend giving it a try.

A quick Remicade question....

Do you have to stay on the Remicade or do you stop it once your fistula is healed/closed?

I am curious because I read that people are "on" Remicade, and yet they seem to imply that their fistula is healed.

Thanks for the info. I am going next Wed for a Remicade consultation to fix my fistula.

Olive Oil, I had a fistula plug procedure done in Aug which my surgeon just did because he was doing a EUA to confirm I had an R/V fistula. Since he was in there already he did the plug but was very upfront by saying it probably wouldn't work (due to the location of my fistula and I think they tend not to work for R/V fistula). It failed within 48 hrs. Then a month later he did a pouch flap advancement with fibrin glue. That lasted about a month but then I went off the cipro/flagyl for a few days and I started leaking (went immediately back on Cipro but still was leaking -- however it wasn't as bad as before the flap). Then in Dec they started me on the Remicade and I have not leaked since the 2nd infusion. In January they started me on the 6mp (and I'm still on the cipro). I now have maintenance Remicade treatments every 8 weeks. I have not had Gracioplasty yet but have heard it can be very successful. I am so glad it worked for you. These fistulas are tricky.

Corie Jay -- I don't know how long they tend to keep you on the Remciade (have been wondering that myself) but I was told the 6MP will allow me to eventually get off the remicade (however long eventually is I don't know). I am concerned about being on both of these meds long term. It is definately better than having a leaking fistula but I am afraid if I stop the meds then it will open. Also I have not received confirmation the fistula is closed. I don't think they want to go in right now since I am not having issues. THey want to keep me on all the meds for awhile unless I have a major reaction. I am always tired and I've gained weight (not sure if there is a connection) but I just still generally have a sense of ickyness from all the meds. However, I can't complain -- no leakage and only get bad headaches and tired from the Remicade for a day or two and then I am OK again. ]

Corie Jay: Good luck with the Remicade consultation. I really think it is working for me. They think I have Chrohns though so I am not sure if that is part of it but it does seem to be working and I don't get terrible side effects just really wiped out for a day or two. How are you doing? How is the fistula? Are you taking any other meds (ie antibiotics )? I have been on Cipro for 8 months.

Please let me know if I can help in any way.

Thanks.

Kim