Rectovignal fistula

[Jennifer Scotland]

Hi I have suffered crohns diseases most of ma life and also lived with a rectovignal fistula most ma adult live. I was on inflexmab on and off for over 7 years which helped control the fistulas. How ever I was took of the treatment as my consultant though I was on to long was good for my body. So he wanted me to try surgery. This involved stitching the fistula then glueing pig skin to the hole. However 3 days later my stitches and skin came the surgery has failed so am totally gutted about went though all that pain only to make the fistula worse. My surgeon wants me to get the bag but am not happy about feel a would rather live with the leaking ect than the bag. I don't know weather to try more sugery or hope the fistula go back the the way was before surgery try live with it. As after 8 year I am in remission from my crohns beginning to get ma life bk but now faced with this and struggling to deal with all theses decisions.

Can anyone help that bn same position thanks Jen

 

[Waverly]

Hi Jennifer Scotland,
I've been dealing with a rectovaginal fistula for over a year now and it just won't heal on its own. Less than 2 weeks ago, I had the rectovaginal fistula repair surgery and a temporary colostomy. Our cases may be different because I've had crohn's for 30 years and nothing has put me into remission. I kind of saw the surgery as a last resort. The ostomy is needed to allow the rectovaginal fistula a chance to heal without irritation of bowel movements. My time line is to have it reversed in 8 weeks if all goes well. I'll admit, the colostomy is going to take some adapting, but I'm really hoping it will be worth it. I don't know what to advise you, but I can help answer any questions if you decide to go the route I've taken.

I really hope you heal on your own and don't need anymore surgery.

 

[grayk]

Jennifer Scotland,

I just stumbled into this support forum and was wondering how you've been doing. I also am fighting a rectovaginal fistula and understand how traumatic it can be. I lived with a bag for 9 months, and once you get used to it, it really isn't as awful as you would initially think.

I have been very frustrated with the lack of progress with my fistulas. I have had seton drains in place for 6 months and have seen no improvement. I have begun talking with my doctors about the potential of me going on TPN to give my bowels a rest. You may consider doing the same with yours. You wouldn't have to have an ostomy, but you would have to give up solid food. Just a thought. I'm trying a new medication, and if I don't get positive results with my fistula and inflammation, I am going to ask to go on TPN.

Hope this helps and finds you well.

 

[MrsW]

Hi Jennifer,
I'm in the same situation as you...tried all available meds for my rvf then advancement flap surgery, but 3 days later began leaking again worse than ever so surgery failed. Saw my surgeon today & we discussed stoma surgery. To be honest I am beginning to think that sounds like a better option than having more poo come out vaginally than back passage, & constantly being sore & irritated from the constant discharge.
The only comfort I have is knowing other women understand cos we both have the same problem :kiss:
Would luv to hear more about how you cope with yours. I haven't been coping too well since my surgery failed