Thanks for your reply! I'm happy to help in any way I can. To answer your questions, there really aren't any clothes I can't wear. I live in Florida and thought that bikinis were going to be off limit, but much to my surprise, I found a two piece that works! It's a bikini top with a skirt bottom.
I'm happy to say that in the last 3 years that I've had an ileostomy, I've never had any problems with the stoma area or with bags coming unsealed. There are a lot of products out there, and sometimes it's just trial and error to find the right one for you. I got lucky and have used the same one my Ostomy Nurse recommended in the hospital.
I didn't think I was that sick when I got the ileostomy, but then again, after 7 years with Crohn's, I had forgotten what it was like to be well. The disease was causing fistulas and abscesses in my butt area that were very painful, so I started out with a temporary ileostomy to bypass the colon and rectum, so the abscess wounds could heal.
Before I had surgery, I thought that having an ostomy was going to be a big deal, but once I had one, it surprisingly wasn't. It gave me a freedom that I hadn't known in years. It's so flat and unnoticeable under my clothes that I truly forget it's there.
Your hope for a better life is in beating this disease, and the best way to beat it is to take away the place it wants to attack. You can live a completely healthy and happy life without a colon, and once you're healthy, the sky's the limit on what you can do!
That was great advice that the other ladies gave you about meeting someone with an ostomy, so you can see for yourself how unnoticeable it is. I told my surgeon to call me if they ever have a patient who is scared (like I was) and wants to talk or meet in person. I had never met an ostomate before I had surgery, and I think it would have really helped ease my fears had I done that first. I also wish I would have known about this site, because it would have helped immensely, as well.
If you want to see pictures of us, we have a site at www.photobucket.com user name: crohnsdisease / password: 6mp3asa
Feel free to upload a picture of yourself, too!
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.