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Crohn's Disease
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Posted 5/14/2014 8:40 AM (GMT 0)
I am 47 and was diagnosed with severe UC when I was 29. Had my entire colon removed. After that, I never went back to the doc and just managed pain and flareups with Tylenol. about a year ago, I met a woman who turned out to be a GI doc. She diagnosed me with Crohn's after a scope. Since then, I have been on Humiera and now she wants to put me on Remicaid.. Imuran.. and I've been on Tramadol to manage pain. Its been a drug roller coaster and I seriously feel worse than when I thought I had fixed my UC with the removal of my colon... any advice guys? I am up now because of night sweats.. and my hair seems to be falling out. BTW: I think the night sweats is from Tramadol withdrawl. I overdid it and now I am out of pills.. but who knows.

Should I just go back to Tylenol?
Posted 5/14/2014 12:46 PM (GMT 0)
Hi SusieQ. Is the woman you met your GI doctor? It seems that you should be under a good GI's care if you are having these symptoms and your colon was removed. Do you have medical access to a good GI?
Posted 5/14/2014 1:50 PM (GMT 0)
It seems from your description of events that your UC diagnosis was wrong. Colectomy is a cure for UC. Since you continued to have flare ups and pain after the colectomy it would seem that you had Crohn's. Colectomy is not a cure for Crohn's, since Crohn's can occur anywhere in the digestive tract. It is fairly common for Crohn's to recur after surgery. Some people get years of remission and others do not.

Do you know the extent of the inflammation in your bowel? How long have you been on Humira and Imuran? Why does the GI want to switch to Remicade?

This disease requires you to be knowledgable and advocate for yourself. It's also complicated enough that you should probably bring another adult with you to DR meetings so you can capture all the information that is being shared.

Welcome to the forum.
Posted 5/14/2014 1:58 PM (GMT 0)
Thank you all. The woman I met is a very good GI doctor and has been very kind. She agreed that I probably had Crohn's all along.

Currently, I am not on any medications, but feel as though I am going through withdrawl. I was on Humira for about 20 weeks and never was on Imuran. My doc wants me to switch because the Humira didn't clear up any inflammation.

I've realized that I must educate and advocate for myself. That is why I am here.

Thanks so much for your support.
Posted 5/14/2014 2:09 PM (GMT 0)
Where is your inflammation? Are you an ostomate or did you have a j-pouch reconnected to the rectum?
Posted 5/14/2014 8:28 PM (GMT 0)
I have a j-pouch. Inflammation is primarily in the lower descending colon. The pictures show I have a lot of scarring (probably over the last 15ish years).. some open ulcers, but no bleeding. I am going to try and control things with my diet. I started today, but have tried before and it makes me feel better.

http://scdlifestyle.com/about-the-scd-diet/
Posted 5/15/2014 2:15 AM (GMT 0)
Hi SusieQ. Sorry you are not feeling well. You say that the inflammation is in the descending colon, but when you have a j-pouch you don't have a colon, they use the small intestines to make the j pouch after removing the colon. Is it possible that you have inflammation in your pouch? Pouchitis? Some drs use biologics when the pouchitis is bad, I don't know if this could be your issue.

Ask you doctor to explain things to you so you know what she is thinking and can take part in the decision making.

Hope you feel better soon.
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