Anyone had gracilis flap repair for rvf? Need advice on surgery and post op recovery pls!

I ve been told last week I m to have a gracilis flap repair surgery for a rvf I ve suffered with since 2008. Has anyone had this op? Any advice on how bad it is? How is the post op recovery as I have a toddler to look after? Having temp stoma for 3 months too.

Have you underwent the surgery yet? How did it go? I am almost in the same situation. They want to de a gracillus flap to fill a peri anal abces. Already have a stoma And alot of other stuff too :-(

Hi flarkie. Had the op three weeks ago and am feeling great. The hardest part for me was adjusting to the stoma, even tho it's being reversed in a couple months. Also after the op I had to stay in bed for five days. It was not the nicest of hospitals so this was also not so great. But pain wise from the gracilis surgery it's been minimal. I had the morphine pump for the first nite them paracetamol since. It's amazing how quickly the scars on my leg have healed. Would recommend getting it done, the hardest part is waiting to see if its healed inside. Let me know how you get on. Or feel free to ask any questions. What hospital are you getting it done at? I was in Glasgow x

fazell72 said:

Hi flarkie. Had the op three weeks ago and am feeling great. The hardest part for me was adjusting to the stoma, even tho it's being reversed in a couple months. Also after the op I had to stay in bed for five days. It was not the nicest of hospitals so this was also not so great. But pain wise from the gracilis surgery it's been minimal. I had the morphine pump for the first nite them paracetamol since. It's amazing how quickly the scars on my leg have healed. Would recommend getting it done, the hardest part is waiting to see if its healed inside. Let me know how you get on. Or feel free to ask any questions. What hospital are you getting it done at? I was in Glasgow x

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Thank you so much For your reply! I am getint it (maybe) doen in Leuven Belgium. So I have a huge infected abces (really huge!) And bespieders the gracillus they also want to remove the rectum and make a a rectum with the colon.
Alreedy they tried so many things you wouldent believe it really. The pain is horrible even with 3x oxycontin daily.

So can you tell me more about your situation please? Your abces started from the anus? Was infected Aswell?

Big Hug from Holland (tonight we will kick ass in the world cup)

Hi I ve had crohns for twenty years and they think it's started with this which has caused s fistula to form between my anus and vagina. They ve used the gracilis muscle to heal up the fistula hopefully. And I have a temporary stoma for three years. It's been awful but I finally feel I may be getting somewhere now I ve had this op. From what you say I think you should seriously think about having this operation as it doesn't seem like it can get any worse for you. Pain wise this surgery is no problem. It's just frustrating being confined to bed for a few days while it heals. I ll be supporting holland tonight too! Good luck x

Meant to say a temp stoma for three months not three years x

Hi Fazel,

I am happy for you that your terrible fistula healed so good!

The problem on my situation is not only the gracillus surgery but also the resection rectum. Its like a 2 in 1 surgery. I have a stoma now for 1.5 year and I was hospitalised for more then A WHOLE YEAR!!! And in this year the operated me about 50 times. Many times I was on the VAC therapie wich ment that I wasnt allowed to get out of bed.
Honestly my life is destroyed due to Crohns. The gracillus is verry good for vaginal-rectal fistulas I have read this bit for my situation I am not sure.
So youre from Glascow I know its a beautifull city in Scotland! My name is Marcus I am 33 years old and live in Rotterdam. Lot of healing power wished for you!

Aw Marcus I really hope you get some relief from all this pain. Crohns is a horrible illness indeed. Please keep me posted on what you decide to do about everything. Sending some healing power right back at ya! X

Hi fazell
I am interested to hear more about your gracilis op for rvf. I had advancement flap surgery 2 weeks ago for a rvf that failed after 3 days & now am leaking worse than ever. My colo rectal surgeon has not suggested this procedure but it sounds promising. I have been told my last resort may be a stoma if there's nothing else they can do but I will mention your procedure to him next time. I don't care about a temp stoma or pain afterwards, I just want to feel normal and stop leaking poop

Hi mrs w. I m going to see my surgeons next week again about going back in for a stoma reversal, until I have this done I won't know how it has gone. Like you this was a last resort, I had surgery last year and the same as you it made things worse. Are you in the uk? I had my surgery done in Glasgow. But my local hospital basically told me there was nothing more they could do. It was only because I requested to be referred further afield I have actually been given some hope. Don't get me wrong this op was quite horrendous in the few days after surgery and the shock to the system having a stoma was massive. But like you I was absolutely fed up with the leaking. I ll let you know how I get on, fingers crossed x

I am in Australia and have a lovely team of surgeons who really want to help me and my misery! My surgeon said to me yday that a rvf is the hardest thing in Crohns to fix. In your case, won't they be able to tell if it's worked until the stoma is reversed? Are they fairly certain it will be successful?

They said everything so far looks like its healed but they won't know how successful until the get rid of my stoma and I start going to the loo normally. Obviously that will tell if the fistula track has been repaired. Not sure how much you ve read about the gracilis flap repair, but they basically take a piece of muscle from your inner thigh, loop it through to your perineum, and repair the fistula track with it. Don't mean to sound condescending but it's quite hard to get any info on the op itself I really struggled. In the meantime ey give you a temp stoma to let it heal, as there s no stools passing through your rectum it gives it more of a chance. I get mixed answers when I ask about success rates. My colorectal surgeon said she s only had one case that didn't work, the sister s in the war said its a fairly hi success rate. My plastic surgeon ( who does the op wi the colorectal ) is quite negative but I think he just wants you to be aware that it can fail. I think he s worried more about having active crohns in the bowel means there's a higher chance of it returning. The way I looked at it was if I went ahead with the op and it didn't work, at least I tried. My colorectal surgeon and plastic surgeon are two of the best in the uk, and like the colorectal surgeon said she wouldn't have recommended this for me if there wasn't a quite high success rate. Mention it to your surgeon see if they do this sort of op.

Thanks fazell, you have given me hope that there might be something else that might work surgically. I don't see my surgeon for a few months but will def bring it up. Let me know how yours goes. I really hope it has been successful for you. X

Thank you fingers crossed its worked x

Fazelle so they want to plan a gracillus flap For me Aswell. Also they remove the rectum and attach the colon to the anus. I already have a temp. colostomy. When the flap surgery works they remove the colostomy.

Fazelle what do you think should I go For it? I have the worst peri anal Crohn ever.

Hi flarkie hope you are doing ok. I think if you are suffering so badly then go for it. It can't be any worse, and if there is a chance it helps it can only be a good thing. X

Ok thx For your advise Fazel

Hi fazell hope you are fine and your op has healed completely. I am also suffering from rvf , I had two failed advancement flap repair so far and they Are going to do a gracilis flap for me now. I am so worried about the op as I already had tow failed op and my situation got worst after each op. Could you please give me an update from your healing process?

hi Natasha. Well I had the gracillis flap op last June and last week had my stoma reversed. It's been a long hard few months. Hated the stoma. But so far everything is back to working normal and no leaking. I feel like a new woman. Fingers crossed it stays like this as it makes it all worth while. Don't get me wrong the initial op is a big one and the first few weeks of recovery are hard, but you soon get into the swing of having a stoma. The fact it's only temporary makes it slightly easier. I should have only had it for 3 months but had overgranulation tissue which is why it was left that but longer. I guess you have nothing to lose getting the op as it s worth it if it increases your quality of life. Let me know how you get on.

Hi thanks for reply. I already have a loop stoma for over nine months and my second op was failed because of too much rectal stool discharges. Now they are going to do an end colostomy on me first and after few weeks I will have my gracilis flap repair. What caused your rvf? Was it obstetric fistula? How big was the fistula? Mine is very big now and I don't have much hope because of that. I had a really difficult time last year.

Aw I know how awful it can be. I had two rvf caused by a combination of Crohn's and child birth. Symptoms didn't really start till after my birth, so I think they just like to use the crohns as an excuse so I don't complain. Never had problems before hand, and had crohns 20 yrs. probably a combination of the both tho. Don't give up hope they can do a lot with the gracilis flap repair. Where are you having it done? I had a really good surgeon in glasgow. X

I live in Germany and my surgery will be in Mannheim. Mannheim has a good reputation for these kind of surgeries. But I had a very hard time since I had my first failed op and I cannot imagine another fail surgery. This problem made me emotionally so weak and I am very worried. Do you know what will happen if this op fails? My surgeon is very hopeful ad he never talks about failure.