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Just a little about me

My name is Jeff and I'm 25. I was diagnosed in 2008 with Crohns Disease. I was in the Army at the time and when I got diagnosed I was medically retired out in 2010. Since then I have been a stay at home dad. I have been on Remicade for 3 years and also on Imuran. I recently saw the surgeons at Vanderbilt about removing my ileum vavle. So they did a colonoscopy today and it wasn't good. They said that my rectum, anus, and something else is so inflamed and ulcerative that it would do no good to just remove the valve. Now they want to remove everything. I would have to have a bag for the rest of my life but I'm not ready for that so me and the surgeons are trying to find another way such as removing the valve and having a temporary bag till the rest calms down but they are not sure that it would work. Has anyone else been in this type of situation?
 
Just to give another perspective: I have a permanent ileostomy and I would not go back to using the bathroom the "normal" way for anything. The ileostomy has made vast improvements in my quality of life. It hasn't caused me any problems, it doesn't stop me doing anything - in fact, I can do more now than I could before having it.

It could also save you from other complications later on.

Maybe if you have a temporary stoma you will find out if it's as bad as you think it will be. I know some people find it a lot harder to adjust to than others.
 
Thank yall. My grandfather had one cause he had colon cancer. As far as the second opinion. That was my second opinion. They still ain't sure what to do. But I appreciate the advice.
 
My son was having trouble in his terminal ileum and his sigmoid colon and rectum. The GI at Mayo and the surgeon there decided to 'divert' the large bowel to see if rest would help. They didn't want to jump to removing my son's large bowel. They did a loop ileostomy from a healthy area of his small bowel. Above the terminal ileum. My son is 14. He had been in so much pain and frequent diarrhea before surgery. For years. The bag was a HUGE relief for him. In fact, he even said, "If I have to stay this way, I will". The diversion helped the terminal ileum & sigmoid colon heal. The rectum stayed angry. (But since he was 6 yrs old every colonoscopy has shown ulcers and inflammation- so 8 yrs of problems.. so it was pretty messed up). But he was still able to eat without pain and was a lot better than he was before surgery. But he needs to grow some heighth and the inflammation is stopping that. To still try and avoid surgery, on August 8th he started the new Vedolizumab. It's been slow... but this past month (9-11 weeks from starting Vedo) we've seen some improvement. Talk of surgery to remove his rectum has been put on hold. Last week his SED went from 78 to 37 and his CRP went from 3.6 to 2.7. So we are hoping we are seeing signs of healing. His 4th dose of Vedo is Nov 19th. The Vedo thread on this forum isn't a very good one. Mostly complaining on there. Its hard to know if their side effects are just crohns. My son has complained of no ill side effects. And he has been on all the TNF's prior. So he's got a lot of knowledge for his young age.

The bag... if you have to do that for awhile.. isn't as bad as I feared. My son even went to Oceans of Fun water park over the summer and flew down the slides all day just like the other kids. No one at his school even knows he has a bag. And it hasn't affected him in a negative way at all. He can finally eat without pain. And he uses the restroom "when he wants to" !! Before the bathroom visits controlled his activities. Not anymore! Hope this helps. Ask anything of me and I'll try to help.
 
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