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Surgery removing colon/rectum

Tue, April 24, 2012 10:12 AM

Hi! I am a 29yr old who has Crohn's Disease and have had it for like 15 years now. I have had surgery before where the took out part of my colon, and had a temporary ostomy. They told me that I would probably have to have a permanent one at some point in my life. Well I think I may be getting to that point. I have sever inflammation in the rectum and nothing seems to be working. I am just scared as I don't want to have a bag, but at the same time if its going to make my life better and I won't have anymore issues then I am considering it. It is just hard as I am single and the thought of having a bag and trying to meet someone is hard. Does anyone have any suggestions or anywhere I can go to get some answers/advice?

Thanks,
Jennifer

jbeaner22
Joined Apr 24, 2012

Wed, May 02, 2012 1:44 PM

Hey Jennifer,

II have Crohn's Disease also, and have had it for about 20 + years. When I was 21 in 1987, I had just some of my colon and intestine removed due to a year of stomach pain, and they found it was CD. I was fine till 2003. This time it really came back and was mainly rectal Crohn's, just like you were saying. I kept on getting operations to get tre fistulas and the CD under control around the rectum area, so lots of wound care from the operations, and was sent home to let it heal. My surgeon had said also during that time that it was very likely that I would need a colostomy someday. My Crohn's just had gotten to the server level by 2009, and had exhausted the medications that I was on Remicade and Imuran for 3 years and it just stopped working. With all that, I was always really uncomfortable for years, from the operations and having CD in the rectal area. What a lousy place to have it to, lol I could not sit down comfortably for years, and simply bending over to tie my shoes would hurt, let alone all the drainage. You may be able too relate to some or all of these things?! I was pretty fed up with it, and my surgeon said, we can keep doing these operation's, or get hit this head on and get a colostomy. It was the smartest thing I could have done! I had most of my colon removed, and my rectum and anus were removed. I am playing on a ice hockey team now and I don't even notice it the ostomy. I hope that example helps as far as having a idea on how active you can be? My story is long, but after the ostomy, I have never felt better. Write back anytime if you would like more insight!

Andrew

hockey rocks
Joined Aug 5, 2009

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