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End of the road?

Wed, September 04, 2019 6:54 PM

I was diagnosed in September of 2003. Since that time I have used every treatment available. My most recent medication was Azathioprine which caused acute pancreatitis in less than a month.I have been on prednisone several times (which is normal for a flare) but it has cause my blood pressure to be low (or that is what is suspected at this time. I see an endocrinologist on the 11th the verify).I saw my gastroenterologist today. 3 years ago I had surgery to remove most of my colon (about an inch and a half was left that was attached to the end of my small intestines). What is left of the colon and the end of my small intestines is now badly affected. An endoscopy showed damage in my stomach and the first part of my small intestine as well. My doctor told me today that she doesnt want to do surgery to remove the part that is left of my large intestine and the damaged part at the end of my small intestine because it would do no good since I have active Crohns in the stomach and beginning of my small intestine. She thinks it is likely that there is damage in the middle part of the small intestine as well but since a colonoscopy and endoscopy cannot be done in that part there is no was to say for sure except that there is possible narrowing identified with barium xrays (they were classified as inconclusive but likely). At this point, she is keeping me on 10 mg of prednisone, a medication to help absorb bile as that is what the end if the small intestine should do but is failing to do, and she want me to drink 2 ensure protein daily to help with malnutrition (my potassium, calcium, vitamin d and iron are all low). I feel like I am fighting a losing battle at this time. Has anyone else been given this news and did you find a solution?

Ressamm20
Joined Sep 4, 2019

Fri, September 06, 2019 6:57 PM

Reply posted for Ressamm20.

I’m so very sad to hear of your plight. I am a new UC patient. The only things I can offer you are positive thoughts and prayers. I truly hope you get some good answers and quick relief.

IMBEBE
Joined Sep 6, 2019

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