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Help Please

Mon, August 23, 2010 10:09 AM

Hi Everyone,

I was diagnosed with UC when I was 15 years old. I recently went in for a regular colonoscopy because I've had UC for nine years and ended up with a perforated intestine. I had emergency surgery that same evening and woke up the next morning with 1/3 of my colon missing, a new diagnosis of Crohn's, and an illestomy. I'm an active person, a teacher, and really struggling with the bag. I'm paranoid that people can see the bag through my shirts and that I smell. I have my husband smell me constantly to make sure I'm not putting off an odor. I wanted to know if anyone has had the reversal surgery and how it went. I'm planning on having the surgery in June so I don't miss more school than I already have. Also has anyone ever been on Humera? I would greatly appreciate any advice since I'm kind of "new" to all of this. Thanks :)

xcrunner2705
Joined Aug 23, 2010

Tue, September 07, 2010 10:33 PM

Reply posted for xcrunner2705.

I was diagnosed when I was 15 as well and finally went for my J pouch when I was 22 after the Dr.'s had exhausted just about every treatment method. I was very self conscious prior to the reversal, the bag and all, but I soon realized that, like others have stated, it's only noticeable to you. I actually played soccer all the way through college with the disease, the bag, and then after and I can say with absolute certainty that the reversal was the best decision I ever made concerning the disease.

ta112
Joined Sep 7, 2010

Mon, August 23, 2010 2:47 PM

Reply posted for xcrunner2705.

Oh, also, people won't be aware of your bag as you will be. I haven't changed the way that I dress very much since mine. If I really want to be sure of concealing it, I tie a shrug around my waist (which I did before the surgery!)

magenta
Joined Nov 25, 2009

Mon, August 23, 2010 2:46 PM

Reply posted for xcrunner2705.

I currently have the bag and I can assure you that no one smells anything. I, too, was concerned about that. I figured if I could smell my dogs poo through a bag upon cleaning up after her, then people could smell mine. This is not the case; the ileostomy bag is much thicker. I was told to put an Altoid mint in the bag upon emptying it, but I think its more for peace of mind that anything else. Enjoy being able to eat what you want with the bag! Im going for my take-down next week and will be using my J-Pouch exclusively. Im more nervous about that than the external bag I've had and the freedom that comes with it. Good luck and hang in there!

magenta
Joined Nov 25, 2009

Mon, August 23, 2010 12:30 PM

Reply posted for xcrunner2705.

Hi

About 6 years or so ago my husband had a temporary ostomy - not related to Crohn's or Colitis - but 18 inches of his intestine was removed. He had the bag for 6 months before the reversal. I hope to encourage you that living with the bag - for him as well as me, was not an issue. Also, everything went very well with the reconnection surgery and he is still healthy and doing well today - almost 6 years later.

If I can help in anyway, please let me know. Best wishes to you.

momofmouse
Joined Jul 2, 2009

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