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Focal Active Colitis? Help

Posted by zcheng32 @zcheng32, Jan 30, 2021

My gut issues started after taking a course of antibiotics for my stomach H pylori infection. Now I don't have H pylori anymore but my gut feels so inflamed. I also have diarrhea, cramps and food intolerance. In september 2020 I had a colonoscopy. It showed normal mucosa but non-specific inflammation from the biopsy. The report said "focal active colitis" that is not UC, Crohn's or microscopic colitis. I was able to bring the diarrhea under control by doing the SCD diet, but the inflammation was not down. My doctor thinks it's not IBD, just IBS. He gave me a trial of budesonide but as soon as I tapered off, the inflammation came back. Both my doctor and I are at a loss and he's referring me to Mayo clinic.
Shouldn't a person with only IBS have an entirely normal colonoscopy? Mine is not but my doctor insists its IBS and refuses to treat me.

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lighthouseceliac | @lighthouseceliac | Apr 10, 2023
In reply to @gettinby "Starting in November I have been experiencing extreme nausea belly pain vomiting weeks at a time...." + (show)
Profile picture for gettinby @gettinby

Starting in November I have been experiencing extreme nausea belly pain vomiting weeks at a time. I have been unable to eat or keep food down. Weeks of diarrhea. This has been going on now for SIX months. I’ve had my appendix taken out. That wasn’t the problem. I had an endoscope that came back normal. I had a gastric scan, that too came back normal. Finally had a colonoscopy with biopsy and the results were, focal active colitis with lamina propria hemorrhage. That was two months ago. The only way I even know the results is because I went to the dr office to physically get them. They have scheduled me for a follow up 4 months from the date of the colonoscopy!! I’m still in pain, still having symptoms. I’ve already contacted a new dr. I really just want to know what this diagnosis means. Is there something I should be doing in the meantime? Any help would be appreciated

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You are doing all the right things. Getting to a Doctor that takes the time to listen is everything.
I don’t know what I would have done without my doctor. She is incredible, I have no other words to describe her except she is my hero. Dr. Harris at Scottsdale AZ Mayo Clinic.
Food is so tricky, it is a tough mental game. Get to a nutritionist as soon as you can to encourage your food issues. I take gummy vitamins and a good probiotic that helps.
Stress is at the heart of these diseases. Try to read ways to identify and ease your everyday stresses.
This will take time, be patient with yourself. With the right care and meds you can function again. It is a lifelong battle, never give up getting the best care.

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