Hi Everyone
I am somewhat new to posting a message on here but I have read many posts on here over the past year or so. There always seems to be some good advice by others. I have been dealing with a r/v fistula for the last couple of years. They do not think it is Chrones related as I was diagnosed with UC back in 1994. I have had THREE surgeries in an attempt to fix it which all have failed. All three have been done trans-anal. After consulting with the Cleveland Clinic again, it was suggested that I have a j-pouch redo with a temp. ileostomy. However, with three failed surgeries before, I am very hesitant to have this done as I know the first surgery is always the highest success rate. When they say a j-pouch redo, can they usually do that with the same original pouch or do they create a whole new one? Also, I was wondering if any of you ladies have had success with a fistula becoming repaired after a temp. ileostomy? I know the Cleveland Clinic is one of the best places and I had my last surgery done there. I would love to have any suggestions anyone may have on this subject. Thanks!!

Colleen,
I'm a woman that had several surgical attempts at closing a R/V fistula that didn't work followed by a major surgery that took my gluteal thigh flap (smiliar to a graciloplasty surgery) that did work. It's odd to me that they are considering a complete pouch redo before considering a graciloplasty or the like.

Has there been any mention of repairing the fistula via that route. Of course I'm assuming they haven't already tried that; have they?

If you have a pouch redo I think they have to use up more of your small intestines. I can't give you much advice or input about a pouch redo but I can definitely talk to you about surgical fistula repair with a temp ileostomy to divert things while I healed from the surgery.

Please PM me if you want more info; I'd be glad to discuss my situation and how it's worked out for me. My fistula has been closed for nine years now with no problems thanks to the surgery I had.

Best wishes,
Lori

Hi Lori
Thanks for the input. I have spoken with you by phone. That was back a few months ago. I know your surgery was a little different than others but was successful.

I guess what I am concerned with is that my pouch I currently have seems to be fine as the doctors have told me so. I am worried about causing issues with redoing a new pouch. I think the fistula is located near the pouch and they think this would be the best option as this was going to be the surgery I had back in November but after they got started, they chose this to be the best option then. I will have a chat with the surgeon by phone hopefully next week. I may mention the graciloplasty surgery or gluteal thigh flap surgery and see what they think or if that could be a possibility with where the fistula is located. Maybe I can be successful with that and not using any more of my small intestine or jeopardizing the success I have had over the past 10 years with the current pouch.

I am sometimes very tempted just to leave it as it is, but I am concerned if it gets worse that it may be harder to repair. It is now a challenge to check out other surgeons at the Cleveland Clinic as the one who did the previous surgery is currently not doing surgeries.

Thanks again
Colleen

I had 2 repair surgeries that failed. I started Remicade and my r/v fistula closed during the 2nd infusion. ive been on remicade for 17 months. was also on 6mp for a year but had to come off due to low white blood cells. also on cipro. before i started the remicade the only other solution was a temp ileo but ive been able to avoid it with the remicade. i know there may be a day it stops working but it is worth trying. have you looked at meds at all?

Hi Kim

Actually, that was what I had inquired about was to try medication as I was never really on anything except Cipro and Flagyl after the surgeries but not to try and close the fistula. I will inquire about medication to the surgeon next week as I only spoke with the nurse this past week and the surgery is what she mentioned. Outside of having the fistula which leaks almost daily - sometimes not very much but other days more, everything else has been very good with the pouch and all. Mentally, it is has been hard to deal with for soooo long but as I keep telling myself, it could always be worse so I just need to go with the flow and keep a positive attitute. Thanks for the advice
Colleen

Hi Colleen,

My daughter is going through this now, as everyone here knows the original surgeon cut her pouch through to her vagina causing a fistula. After 3 failed atttempts with one surgeon to close, we switched to Dr. Milsom, who used omentum, from her body as a flap to close the hole. It seems to be working as there is much less drainage out of vagina. She is still healing, and we won't know for sure until May 27 when she has an EUA. If this doesn't work he would go in with the help of a plastic surgeon and use muscle from her abdomen and if that didn't work muscle from her thigh. I know everyone is different and everyone has their own feelings and comfort with how they go about this. For us, having the surgery and not having to take medication, especially the meds for this that are harmful to your other organs is the way to go. Also, before Fazio got ill, he read her reports and spoke to me in length how he was going to do a redo. He said 95% effective and he would save 75% of the pouch. We did have an appointment with him, but he canceled due to illness and I'm glad to say we stayed home and things seem (finally), to be working out. Anyway, that's just our experience and our feelings, hope it works out for you. If you need more info on the omentum surgery let me know.

Mila

Hi Mila

I wish your daughter the best and hope the surgery works!! Is the surgery she recently had a flap advancement surgery? Not sure what omentum is? I bet Dr. Fazio was going to do the same surgery on your daughter as I was going to have in Nov. 07 but they opted for a different surgery at the time of operation which they felt was the best option at the time. It was suppose to have a very high success rate like you mentioned. Thanks for the info. Colleen

Hi Colleen,

As explained to me omentum is a thin (maybe even skin like) organ that surrounds our intestines (probably more than that..you can google it and find out exactly). You can move it around and yes use it as a flap. Before Dr. Milsom did this surgery, he wasn't sure if it was still available for use since my daughter's colon was removed. I guess sometimes the omentum is also removed. If the omentum is available it has a good blood supply, therefore healing power. Our bodies are truly amazing. When he went in he found the omentum usable so he pulled it down filling and covering the hole with it. First he separated the pouch and vagina. A urologist put in stents to protect her ureter, a fertility specialist was there to protect her children and a plastic surgeon was there just in case they couldn't use the omentum and would have to use muscle. The omentum was availble so that was used. Four weeks later a second surgery through her rectum to pull the omentum down further since there was more slack now. He didn't want to pull too much in the first surgery, forcing the omentum to rip and destroying it. The second surgery she did not sleep in the hospital and did not need any pain meds. After the first surgery, she still had lots of mucus from her vagina, so we knew there needed some tweaking. Now, a week after the second the mucus is so much less we feel it is working. She may need another tweaking, but hopefully not. Once she is healed and sealed we will wait a month or two for takedown. She's going to college in the fall and we're hoping it will be before, but as we have learned the hard way, it's better to wait a little longer. She is very healthy, takes no meds, eats what she wants and feels great. This is all better than colitis. She had a great college essay!!