Vagnal fistula and abdominal sinus

[Worrywart]

Hello - my first post so please be kind
I'm 55 and have a Ileostomy for bowel disease - Crohn's colitis - I had this 30 years ago and it's been ok. I ended a hysterectomy in January this year and my bowel perforated . I was in hospital for months on TPN. I am now home and eating fairly normally. I feel well and am actually overweight. I have a vaginal fistula and abdominal sinus that seep daily. It's not poo that cmes out and it doesn't smell. It's just a big nuisance and I hate it.
Has anyne had this type of fistula and do they ever heal spontaneously. My surgeon says I have a excellent chance of healing as I am healthy and do not have Crohn's in my small bowel. I find this so hard to live with and feel worthless. I hate it so much.
Anyone got any experiences to share please, hopefully good ones xxx

 

[DJW]

Hi and welcome.
Sorry I can't help. I'm sure someone will be along who can relate.
Sending you my support.

 

[Diver jude]

Hi worrywort , I currently on day 4 in the hosp. I'm 55 and was diagnosed with crohns back in dec with crohns , and a recto vaginal fistula. I haemmoraged and had blood transfusion. They have tried me on lots of drugs and on my fourth remicade infusion I had anaphylaxis shock so they have had to stop that, and I've been on elemental diet for last ten days, sorry it's a long winded story ! I was admitted to hosp a few days ago because I am bleeding heavily from back passage and vagina with big clots, despite previously having had a hysterectomy. I feel there is no seperation between my bowel and vagina and like you I feel so degraded , unclean , I haven't passed any stool whatsoever just all this blood, they are going to do a scope tomorrow and prob a iua , I feel like some sort of freak and wonder when this will all end, just wanted you to know you're not alone and they were hopeful that the remicade would heal the fistula , so don't give up you may find yours does heal, nice for me to hear someone else is suffering the same,and were not alone . Hope you get a good result xx

 

[Worrywart]

Hi Diver Jude
Sorry for delay in reply, forgot my log in details again.
It is a horrible condition although you sound to be suffering more than me. My fistula was as a result of a perforated bowel following hysterectomy ( although I already had a stoma for bowel disease). It is hard to come to terms with although nothing compared to what some go through I know. I think it's the fact it comes out of the vagina that I hate so much. I feel disfigured and a freak and it's all but killed off my already struggling marriage.
Please feel free to keep in touch, and remember this won't last forever xxx

 

[Diver jude]

Hi worry wort , well since we last spoke , I have been to theatre and had an ileostomy done , the recto vaginal fistula has had a tube put thru it to allow it to heal whilst bowel is diverted, phew quite a lot to take in.i like you had a hysterectomy over 15 yrs ago so anything abnormal coming out of the vagina just isn't fair. The surgeon says he may have to do another operation later with a flap to heal the fistula , but wants it left for the time being . I may end up keeping the ileostomy as permanent. My husband and I have been married 30 yrs and he's been so good but I still feel like I'm letting him down. In the last 2 days he's had to accept I now have this bag and string between my rectum and vagina ?? I hope to be discharged home tomorrow so pls keep in touch your my kindred spirit , keep smiling , lots of love xxxx

 

[Worrywart]

Oh goodness didn't realise you were having an Ileostomy . How are you feeling ( stupid question ). Well as I said I have had my ileo 30 yrs and it's been fine honestly no problems. They are hoping my fistula will heal on it's own but I'm not confident.
Well hopefully now things will start to heal . I know it's so hard to come to terms with things, I struggle at times. I hate the vaginal seepage with a passion. But we have two choices - sink or swim. Simplistic but I told myself a few months back, I can even ruin my life now but moaning about this and putting my life on hold or try and deal with it. So I'm tryng to deal with it but I have bad days and I have good days. Life is too short and I'm tryng to just get n with it.
Your diagnosis is quite new so you have a lot to deal with right now. Little steps.
Hope you feel stronger as the days go by and I hope we keep in touch xx
My husband has been good with my ileo - it has made no difference to our relationship. But this year has been tough xx