HealingWell
Search Close Search
☰

(No Subject)

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/3/2012 9:23 PM (GMT 0)
If you have sex with an rv fistula does stool pass through during intercourse? Never had sex. Too ashamed of my fistulas and of what could happen.

I'm a 23yr old female. Have crohns since 14 and an rv & perianal fistula since 16.
Draining is pretty much constant because i had a j pouch constructed and my large intestine and anus removed because at first they thought it was colitis. So my stool is loose at the best of times.

Med: Humira 40mg pen
6mp

Please help I feel as if i have reached breaking point. These fistulas are runing my life
Posted 7/3/2012 10:15 PM (GMT 0)
I don't know the answer to your question, but that sounds awful. Can you have surgery to repair the fistulas?

Where does the stool come from if your colon is removed? Is the fistula between your j pouch and your vagina? Or do you have rectum remaining (hard for me to see how you would if your anus and colon are out).

If the fistula is between your j pouch and vagina, and cannot be repaired, have you considered a permanent end ileo? I think you'd have much better quality of life -- then your intestine is nowhere near your sex organs, and your poop goes in the bag. Lots of folks w/permanent ileos have very good sex lives.

In any case, welcome to the forum, and I hope you can find some relief/answers soon.
Posted 7/3/2012 10:25 PM (GMT 0)
Colon was removed and I had a colostomy bag for a year or so. The jpouch is a loop of my small intestine sewn together to make an artificial anus. The fistula is between the jpouch and my vagina.

The illiostomy/colostomy bag didn't work for me because I developed Pyoderma Gangrenosum so it was extremely painful. So I can either stay as I am or go back to a colostomy bag and if I get pyoderma again I have no options left or I can stay as I am. I can't get surgery on the rv fistula because the doc said it would just fail because of the crohns.
Posted 7/3/2012 10:41 PM (GMT 0)
Is the humira/6MP helping at all w/the fistula? Clearly not enough, or you wouldn't be writing.

There are a few people on this list who are dealing w/PG-- maybe you could connect w/them; there have been some recent threads. What did they try to treat the PG? Did it go away after the reversal?

Is your gi/surgeon at a major teaching hospital? If not, have you gotten a second opinion from people at a major teaching hospital? You have a hard situation, and you need the best....

So sorry you're having to go through all this. Wish I had an answer.

Also, just a tip for this forum: You missed the subject line (I did that too on my first post).... you'll get more responses w/a subject.
Posted 7/3/2012 11:06 PM (GMT 0)
And thank you for taking the time to reply. I was reading the earlier threads and just hoped that someone out there could offer some hope that if i did get the courage to go out with someone I might be able to have a normal life with them.

I'm getting kind of desperate that the fistulas will never close and I will never have a proper life.
Posted 7/3/2012 11:11 PM (GMT 0)
Oh ok didn't know :) thanks for the tip!

Yes it's a teaching hospital in Irealnd. PG is gone now but it was just a steroid cream. I think it was called Protopic 1%. I can't really remember much from that time I was very young.

Yes I had a second opinion and it was to go back to the colostomy bag. I can never do that again it was so traumatic. I still cry at the thought of it.
Posted 7/4/2012 12:52 PM (GMT 0)
Did you get a lot of support the first time you had the bag? What made it traumatic?

My ileo is permanent, and I've learned to live with it -- most of the time I appreciate it, because it gave me my life back. My quality of life is so, so much better than when I was sick.

From reading on this list and meeting people in support groups, I've noticed that a lot of folks w/temporary ileos have more trouble dealing w/them than w/permanent ones. Sometimes it's because the loop ileos are trickier -- cause more leaks etc, but it's also because people pin their hopes on reversal surgery and don't learn how to manage the bag as well as they could.

Too have poop in your vagina regularly sounds so, so much worse than poop in a bag.... at least to me. Of course, your body, your choice, but what if having the bag were less traumatic?

I don't know much about managing PG though, but if a cream would do it, then perhaps it's not the main issue w/having a bag again? Or is it?

Again, I encourage you to post again w/a subject heading
✚ New Topic ✚ Reply