Anyone have a stoma for RVF?

[MrsW]

Hi here's a question for the ladies....
Has anyone had stoma surgery for a rectovaginal fistula? My fistula is so bad & today when I had a colonoscopy my GI dr said you can 'drive a truck thru it!'...anyway both him & my colorectal surgeon think I would have better quality of life with a colostomy bag. Just want some feedback from any women who may have been in my situation & had the surgery done, & how it changed things positively?? I'm very scared of having a bag but anything has to be better than waiting in line at the hospital admin desk this morning & having uncontrollable diarrhea run down your legs Not what I expected would be happening to me at 43 years of age!
Thx for your imput in advance. X

 

[Walt]

I'm very scared of having a bag but anything has to be better

Good Day MrsW,
Sorry I cannot add any value on point.
I just wanted to say, I am sorry that this is your current situation.

Also that I too am in the "preparing for bag" phase of my Crohn's.
My perianal fistulizing Crohn's disease is active despite Humi/Metho/Prednisone, etc etc.
damage is accumulating.

I have just only learned a couple of days ago that "preparing for bag" was a place and "a thing".
Upon grasping that new idea, it took me little time to suddenly see myself "there".
[one bright day I did not know of the place, next day I find out it is a real place, bump my head to realize I am in this new place...uggh]

Some see an ostomy coming from far away.
Some enter through the ER gateway knowing it might happen.
Some wake up from expected routine surgery with a surprise and a new friend.

The physical challenges of Crohn's disease are rivalled only by the mental and emotional challenges._WCC

Sending you a pocketful of courage and a bucket of strength to face the challenges ahead.
wishing you peace,
and less suffering,
Walt

ps I am scared too, but as you said:

I'm very scared of having a bag but anything has to be better

 

[Susan2]

Hi both MrsW and Walt.

I came to a bag because I was told that, if I didn't have the surgery, I would quite possibly die! I was quite familiar with the diarrhoea-running-down-the-legs place, MrsW, although not caused by the same situation as you are in. And, as lots of us will attest to, my quality of life is much improved since I have had my ileostomy.

 

[MrsW]

Thx for your replies Walt & Susan. I have heard more positive comments about ostomies than negative. Surgeon appointment is 1st Dec so will discuss then but it's looking like that is the best solution for me too at the moment

 

[Muppetgirl]

I have no personal experience to offer but I hope things improve whatever your decision.

I do however have a close friend who has a RVF post ileostomy. I'm not going to speak for her and others in the siutation. However, on a purely factual point, I know that sometimes output still goes the traditional route and so she still ends up with it pouring out the front. It might be different with a colostomy, I don't know.

 

[smallfry]

I had a diverting loop ileosotomy for over a year to give my butt a rest. It was the best thing I could have done for myself. It used to hurt so much to poop. I still had some issues though and decided to make it permanent April this year by removing my large intestine and anus/rectum. My butt is all closed up now and doing well
everyone is different with how they react to having a stoma as it's a big change on many levels.
Do you know if it will be a diverting loop or made permanent at all? Do you know for sure if it's a colostomy? questions to ask if you don't know yet.

Here is a link to how my diverting loop surgery went down, hope it is helpful to you, there are stoma pictures: http://crohnic-crohns.tumblr.com/post/52921841409/diverting-loop-ileostomy-my-first-weeks-stoma

 

[MrsW]

Hi smallfry,
Yes it would be a diverting loop as I'm still hopeful my fistula can be repaired. Seeing my surgeon 1st dec so will discuss then. Thx for sharing your experience...you are brave

 

[dgg]

Hi MrsW. I've had fistula issues since a few months after delivering my first child (7 years ago) and have probably had 15 surgeries since then. My fistula was called a horseshoe fistula which is one of the most complex to treat. I was living with pain every day and drainage which as you know is really gross. The first time a doctor mentioned getting a bag I cried. But over time I thought more and more about it, and spoke to people who had positive experiences with it and by last year, mentally I was ready.

Last summer I had a temporary loop ostomy and then 3 months later a flap procedure (I opted to not have both procedures at once). A few weeks after the flap, my drainage stopped. I honestly never thought the day would come (I had been losing hope). Since then I have felt amazing! I barely think about my ileostomy now... it's just what I do and nobody can tell I have it. I am thinking about having reversal surgery but a part of me is scared it will come back (since I have Crohns) and I would be totally happy staying the way I am. I have my life back!!! If you do go this route, I really hope you have a positive experience and in my opinion it's so much better than living with a fistula.