Permanent ileostomy

[-RJ-]

Hi everyone I found this site on a search engine while researching Crohn's and it looked like a good support group/discussion. I was diagnosed with UC at age 14 and got a 3 stage j-pouch surgery at age 17.
It took me 9 months to adjust to my pouch and then I did outstanding for over a year. Unfortunately, since this past September I have had mountains of problems and complications. My surgeon is now exploring the possibility of a Crohn's diagnosis. If I do have Crohn's I really do not want to keep my pouch because all of the medicine and treatments I would have to go through just to hope for some remission. I am interested in getting a permanent ileo if it is CD. Does anybody here have a permanent ileostomy w/ Crohn's? If so, what is it like? So many people steer away from the ileo because they are caught up in the cosmetic and social "hindrances". Me on the other hand, I get excited of the idea of never sitting on the toilet again for the rest of my life.

 

[Mozam]

RJ,

I've been off this board for a while now (hello to all my chums, sorry for being out the loop - note to self; must do better!), and haven't said hello to you - so hello!

The reason I'm replying to your post is because you've asked if anyone here has in ileostomy, and whether or not it's ok. Well, I have one, and it's more than ok. Buddy, my ileostomy didn't change my life - it GAVE me my life. Before I had it I spent more time on the pan than off it, although I'm sure you know all about that. I had my ileo done when I was 16, so was absolutely slap bang in the middle of puberty, and well aware of all the social hindrances that you refer to. The fact is, and I'm not quite sure how to word this - it depends on how you cope, and how your outlook is.

What I mean is, if you have the outlook that it's going to be a nightmare, that you won't be able to face people because of embarrassment etc, then that's what's going to happen. If you have the outlook that you aint going to be embarrassed, you are NOT going to let a silly little thing like a bag that NO-ONE can see, hold you back, you'll be fine.

Obviously, it's horses for courses - it won't appeal to some people, and fair enough. All I'll say is that if the doctor is advising you to get it done, then there must be a reason - doctors may be some things, but I don't think they're time wasters. Personally, I feel sorry for the people (not many) who do turn down an ileostomy because of some unfounded beliefs about it being a "social taboo". I'd be willing to bet a pound to a penny that it will change, for the better, ANYBODIES life that was offered it.

I know my opinion is biased, based on me having one already and it working for me. I will say though, I've yet to meet someone who it hasn't worked for.

Good luck to you matey.

Moz xx

 

[ruthymg]

Hi RJ,

I have an illeostomy and although mine may be reversable, I can still comment on what its like to have one. I have had mine for 7 months now and at first I was affected by the social taboos that Mozam talks about. Now though I feel totally differently. I have my stoma under control and nobody can see it when I am clothed and thats all really that matters to me now. As Mozam says, it really does change your life for the better. I no longer have pain and constant trips to the loo and resting my rectum and colon has almost healed my fistulas (which were excrutiating). At the end of the day its you're decision. I hope you find a solution soon and things start to look up for you.


Ruth