Recto Vaginal fistula - in agony

I am now 52 years old. I was diagnosed with Crohn's just before I turned 21.
I have had 2 major bowel re-sections. Have had several surgeries for perianal abscesses and had a seton inserted. My major problems over the past few years have been obstructions from strictures in my bowel and now I think I have a recto vaginal fistula/abscess My GP put me on flagyl and kephle type drug for past week but hasn't done anything. I have just been to see a gyno and he said he couldn't really help as he was not trained in this area. He spoke to a colleague, a uro gyno (I think) who wouldn't see me as she said couldn't do repair surgery as 99% times these type of fistulas recur so directed me back to my gastro and bowel surgeon who (by the way) have felt the only answer to my problems with crohns is a stoma. I have always fought this with a vengeance. I feel whist I still have control of my bowel and can go to the bathroom naturally I want to keep my rectum (all be it scarred and ugly as it is!) I am scared, embarassed and depressed all at the same time. I really don't feel anyone understands me but after reading some of the stories on this website tonight maybe there are people out there just like me experiencing the same sorts of dramas I have been going through. I have an appointment with my gastro and surgeon in a week or so's time and about to go on a week's holiday but scared I will need to go to ER before then. I think I need to get this abscess drained asap as I am in horroific pain. Just want to share my story with someone

Hello Hellcat,

It doesn't sound like you're having much fun at the minute It's very upsetting when you seem to be going round in circles without getting any answers or relief and it's a terrible shame that this has coincided with your holiday Life just doesn't appear to be too fair at times. I'm very new to Crohns compared to you but already understand how frustrating this disease is, I seem to be controlled by it rather than me controlling it. I'm sorry I have no pearls of wisdom to pass your way, I really just wanted to let you know I was thinking about you and sending you a big hug :ghug: Please take care and keep in touch, welcome to the forum the one sure thing is that you will get plenty of support from the wonderful people here, best wishes.

Thanks Lisbeth. Am going to the ER this morning. It helps to know someone is thinking of me and can relate to Crohns and all of its frustrations.

Will be thinking about you, please let me know how you get on, take care.:ghug:

Hi Lisbeth its Hellcat again. I had a small op and overnight stay in hospital. It turned out to be an abscess but they don't think it is a fistula into the bowel, I'm not sure just a sick of being in pain. They (doctors) are urging me to consider an operation and eventually have a stoma. I am scared but feel it may be the only way forward. I am going to write a separate post asking for anyone who has recently undergone this operation and all the details they can help me with.

Hi hellcat. What meds are you currently on for treatment/ maintenance? Glad you were able to get the success taken care of, and they don't think it is a fistula. Been there, had them myself!

Hope this settle for your holiday.

Hello Hellcat, I'm glad they looked after you in hospital . I don't envy having to make your decision but I think it's a good idea to write a post about it. My GI is considering surgery for me, a resection, I'm very apprehensive about it and was talking with my daughter about it, she was very pragmatic and stated "mum if it means you're not in pain and can eat more variety again, then it's a good idea", I haven't quite got to thinking that myself though. I hope you get the responses you need to help you make your decision, good luck and keep in touch. :ghug:

I'm not on any meds at moment. Just finished several courses of flagyl, kephlex and augmentin and now I have thrush, just to top it all off! I had a seton inserted to keep an fistula tract draining (over a year ago now). Just feeling a bit low.

Hi Hellcat, Just wanted to say I am thinking of you and pray that all goes well!! I am 53 yrs old, diagnosed with crohn's in 1984 after being sick for almost 2 yrs. I have had 6 bowel resections and my upper ileum removed leaving about 1 1/2 foot of intestines left. None of my docs want to do any more surgery since I am so full of scar tissue and everything is matted together. I have also had to be opened up to do a tubaligation, a c-section (hemorraged and lost my son @ 7 mo. pregnant & they also found I was full of e-Coli poisoning), hystorectomy and removal of 11 pound stomach tumor (benign). I now believe I have a fistula between the rectum & vagina but colonoscopy doesn't show it. Been to gyno, gastro and urology with no answers. I have been "leaking" a green fluid from the vagina since November 2011 & wear feminine pads every day. It really sucks that we can't seem to get answers from all these specialist. I pray for your pain to be gone and comfort for you!! I am thankfully not in pain but what is happening is not right either!! Oh and my gyno also tells me that my vaginal walls are "collapsing" and too fragile to even do a paps without my being in agony. I have been in remission, no meds, for about 15 years. This disease really sucks!!!!!!

HI Hellcat,
Just wanted to let you know I'm here if you need to talk about things. I have a temporary ileostomy at the moment to rest my rectal area. I was having problems with abscessing/sinus tracts and fistula in my rectal vaginal septum since 2006 or so. I am very happy that I decided to go ahead with the surgery. I'm happy to not poop in pain anymore!! I'm not sure about your full situation but would yours be temporary too?

Thanks for your reply Pasobuff. Yes my stoma would be permanent. My rectum is very damaged with scarring and active fistulae. I have times when I am able to cope and then it hits me hard and I am in agony. I also have alot of strictures and these have made my bowel so narrow that I frequently have obstructions and end up in hospital for a day or two. Just wanting to find out as much info before I go ahead with the operation as is possible.

Hellcat,
for as much pain as you are in and the frequent hospitalizations, I would think the ostomy would be a good idea for you to consider. I've seen many different posts on this forum by people who have them and almost all of them are happy to have them because of the relief they've gotten from the pain. I hope that you are able to make the right decision for you and that you can be out of pain, no matter what you decide.

Hellcat - have you been offered Remicade to see if they will take care of the fistulas etc?