Gracilis Muscle Surgery for Fistula Coverage - Experiences?

Hi! I had a colostomy in February of this year due to a fistula in my colon from radiation I received several years ago due to cervical cancer. In order to have the possibility of a reversal I must first undergo a surgery where the gracilis muscle is pulled from the knee up to the fistula to cover it and see if it will heal. My fistula will never heal on its own due to location and size. Has anyone had this surgery and if so, can you share your experience with me? My surgeon says success rate is only 20 to 30%, which doesn’t sound too good. Also, my colon is in such bad shape I just don’t know if further surgery is even feasible. Meeting with my surgeon again on 11-4-24.

Hi... hey, welcome. Gosh... my eyes were bleeding reading what you wrote.

I'm sorry you are in this situation and I cannot help... but... just thinking out loud here... "see if it works"... "20-30% success rate"? I'm not a betting man, but you'd have better odds in Vegas playing blackjack...

This doctor? Is he cool? Do you trust him? Because second opinions can't hurt. This just sounds so messed up. My fistula was surgically repaired... although... it developed from the intestine alongside the butthole. Many years ago.

Yours must be the size of a school bus if it can be fixed or healed up by itself. Be careful. Seek research. I have been on this site for a few years. Never heard anything even remotely close to what you are facing.

Sorry. But keep your chin up. You know... there's got to be another out here maybe just on the sidelines needing this story to answer. Sit tight.

Thank you for your comment. Yes, my fistula is very large and very low, almost to my anus.  
Unfortunately, my original surgeon has transferred to another hospital and at my last appointment with him he strongly recommended I stay with his original surgical team due to the serious nature of the gracilis muscle flap surgery and the fact that he does not know enough about the surgeons he will be working with as far as their skill sets with this particular surgery.

I will be meeting with his partner who saw me at the hospital during my second stay there. He stressed to me the fact that since my colon is in such bad shape, he is less than confident this surgery would yield a positive outcome.  Meeting with his partner will give me a second opinion though I have doubts his opinion will differ much. We shall see.

Yes, I am hoping someone on here has been through this surgery and am anxious to hear about the outcome, good or bad.

Thank you again for your comment.

Hi Karliegirl, if the success rate is so low, I'm surprised the surgeon didn't recommend an ileostomy with removal of the colon and fistula. It might be something to ask about at the next meeting.

Hi thank you for your comment. Actually my initial surgery was to be an iliostomy but ultimately ended up being a colostomy due to my colon being in such bad shape.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi there again. Well, I'm kind of confused with your last statement. Usually, if your colon is in bad shape, you get the ileo and colon removed. You are saying the opposite.

Now, I could be wrong, but why would they allow you to keep a bad colon?

That is confusing 🫤 sorry about that. I believe the location of my fistula was one reason and the fact that my surgeon felt it might not be reversible was the other reason if that makes more sense.

Hm, it's important you know every single tidbit, fact. Although the doctors don't have a crystal ball, you have to be on the offense, aggressive about getting to a healthy state, via questions.

You have a complicated case. I'm sorry I can't offer much insight.

My theory has been to save it, revive it, replace it, or get rid of it.

Your colon and this bus-sized fistula is a head-scratcher.

I wish the easiest and safest approach possible for you.

I guess it can't be as simple as removing what's bad, and having an end ileostomy?

Hi Karliegirl, that's the way my colon was from colitis/Crohn's and the meds not working for me at the time, 40 years ago. So my doctor and surgeon agreed that an ileo was my best option.

This article may be of interest to you:

https://pmc.ncbi.nlm.nih.gov/articles/PMC9849283/

Many thanks. I have read a few articles on this surgery and will read this in the morning when my eyes are not so tired.

 Thanks again!!

G-Day K, Just following up on Warrior's comments,

My colon was also in a very bad state, so my surgeon did the right thing and removed all of it and gave me a wonderful, life-saving ileostomy, and I also got my butt sewn up. With what you have, give some consideration to stop thinking of a reversal and go for a life-saving ileostomy. Living with an ileostomy is not that bad once you accept it. Regards, IGGIE

Thank you for your comment. I’m actually leaning toward leaving well enough alone as my colostomy can be left as is with no further surgery required. 

You don't state whether your colon is in bad shape because of the fistula or independent of the fistula. There are studies that show that the GMT surgery was successful in healing fistulas in 2/3 of patients when you consider those that may have required additional interventions. Closure of the stoma was equally successful after the fistula healed. I don't know why your surgical team was so pessimistic unless they were only looking at the initial surgery w/o consideration of later interventions. It is a complex surgery and if the surgeon is no more optimistic than 20 - 30% then I would not consider letting them perform the surgery — they may be reporting their success rates which are not very impressive. If your colon is in good shape independent of the fistula then perhaps you should seek out a surgeon that specializes in GMTs. One last thing is that if you had the radiation in your colon due to colorectal cancer then sometimes the cancer will come back — in this case you may want to have your colon removed and get an ileostomy. You should discuss the cancer prognosis when you meet with the surgeon.

In response to your comment, my colon is in bad shape due to radiation I received to treat cervical cancer. The damage from radiation is what caused the fistula. Statistics show patients who have damaged colons and fistulas caused by radiation have the worst outcomes of any group regarding the gracilis muscle surgery.  I believe the last study showed percentages around 17% for positive outcomes.

I will continue to research. Thank you for your comments.

You are correct if you have a damaged colon and fistula then I don't think the odds are in your favor for the GMT.