Focal Active Colitis? Help

Posted by zcheng32 @zcheng32, Jan 30 8:11pm

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.

Hello @zcheng32, welcome to Mayo Clinic Connect. I am glad that the SCD diet helped you cut down on the diarrhea.

There is some good information regarding colitis here in this study that highlights focal active colitis:
Focal active colitis as a predictor of inflammatory bowel disease: results from a single-center experience: https://pubmed.ncbi.nlm.nih.gov/29254324/

Have you found any foods that seem to make your symptoms worse? Also, do you have an appointment at Mayo Clinic yet?

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Hello @zcheng32,

I'd like to add my welcome to Mayo Connect. I am sorry to hear of your colon problems without the certainty of a diagnosis yet. It is frustrating to have a problem of this sort and not to find a diagnosis and treatment. I am glad to hear that your doctor will be giving you a referral to Mayo. Mayo is a research-oriented medical facility and they have been known to be successful in diagnosing and treating hard-to-understand health difficulties. When you have a hard-to-diagnose health problem it is important to be prepared to be your own advocate and to keep seeking opinions and researching the problem.

In the meantime, I would recommend that you read a Connect discussion on the Fodmap diet. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/fodmap-eating-plan/ This is a diet plan that is often suggested for IBS and it might be worth a try if nothing else has helped. By any chance, are you keeping a food diary that lists your food/drink/activity intake as well as your symptoms? This could be very helpful at your next appointment.

I am also wondering, as is Amanda, @amandaburnett if you already have a Mayo appointment in place? I look forward to hearing from you again.

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@amandaburnett

Hello @zcheng32, welcome to Mayo Clinic Connect. I am glad that the SCD diet helped you cut down on the diarrhea.

There is some good information regarding colitis here in this study that highlights focal active colitis:
Focal active colitis as a predictor of inflammatory bowel disease: results from a single-center experience: https://pubmed.ncbi.nlm.nih.gov/29254324/

Have you found any foods that seem to make your symptoms worse? Also, do you have an appointment at Mayo Clinic yet?

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Yes I'm on a SCD diet and journaling my foods and symptoms. It's been helpful for the BM and gas, but not for the pain or the inflammation. I have a virtual appointment in a week. Please don't tell me its IBS and there's nothing the doctors can do to help.

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@zcheng32 – I believe I have had something similar to you. After being treated for the autoimmune collagenous colitis my symptoms partly returned. Eventually, I went to Mayo and was seen over a few years. Biopsies would at times show focal nonspecific inflammation. I would also respond to Budesonide and prednisone.
After some time it was thought to have been triggered by the reaction I had to chemotherapy years earlier.
After treatment with immunosuppressive medication I went into remission.

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@astaingegerdm

@zcheng32 – I believe I have had something similar to you. After being treated for the autoimmune collagenous colitis my symptoms partly returned. Eventually, I went to Mayo and was seen over a few years. Biopsies would at times show focal nonspecific inflammation. I would also respond to Budesonide and prednisone.
After some time it was thought to have been triggered by the reaction I had to chemotherapy years earlier.
After treatment with immunosuppressive medication I went into remission.

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Thank you! My local GI tried budesonide on me. I did respond to it but once I tapered off the symptoms returned, and he refused to try other stuff….when you came to Mayo did they repeat your colonoscopy? I heard Mayo doctors order lots of repeat tests but I'm really scared of having another colonoscopy done. My last one really irritated my gut and made my pain and diarrhea a lot worse. Can I not get a new colonoscopy when I go to Mayo?
By the way may I ask which immunosuppressive medication brought you to remission?

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@zcheng32 – I think I had 2 colonoscopies during the 4-5 years I was seen there. Like you, I had a more uncomfortable colonoscopy before with my local GI. I didn’t have any problems at Mayo. There were also CT scans and MRIs with contrast.
The immunosuppressive I took was Imuran. It was my choice to go through with it- I could not live like I had done for years. I was aware of side effects- suppressed immune system opens the door for infections. I had my share. I took it for a few moths and stopped when I was too run down from infections.
It did work and I have not had any recurrence. I am aware that it could happen.
Don’t be afraid of being evaluated at Mayo. They are very good at discussing things thoroughly. Remember- nobody will force you to have a test that you are not comfortable with.

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@astaingegerdm

@zcheng32 – I think I had 2 colonoscopies during the 4-5 years I was seen there. Like you, I had a more uncomfortable colonoscopy before with my local GI. I didn’t have any problems at Mayo. There were also CT scans and MRIs with contrast.
The immunosuppressive I took was Imuran. It was my choice to go through with it- I could not live like I had done for years. I was aware of side effects- suppressed immune system opens the door for infections. I had my share. I took it for a few moths and stopped when I was too run down from infections.
It did work and I have not had any recurrence. I am aware that it could happen.
Don’t be afraid of being evaluated at Mayo. They are very good at discussing things thoroughly. Remember- nobody will force you to have a test that you are not comfortable with.

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So if I understood it correctly–you first had collagenous colitis that was only partially treated before you came to Mayo? And after you came to Mayo they found focal active colitis that was not specifically showing as UC, Crohn's or microscopic colitis? And you started Imuran for this non-specific inflammation? May I ask which doctor were you working with?
I have an appointment with Dr. Russell Heigh from Arizona on Friday and I'm really nervous.My local doctor kept saying I don't have IBD due to the inflammation being non specific and refused to do anything. All he could offer was pain meds for IBS which does not help me. I really hope Mayo doctors could have more things to offer and "treat" me. I can't live like this for the rest of my life. Although the SCD diet has been helping with reducing the diarrhea but after being on it for 4 months I don't think that alone is able to bring down the inflammation.

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@zcheng32 – Let me clarify my situation- When I went to Mayo I did not realize that my symptoms were related to the collagenous colitis I was treated for a couple of years earlier. I have had GI problems for years, but this affected my quality of life.
The patchy areas of inflammation did not look like IBD and were non specific. I tried a few meds used to treat IBD, but the only thing that worked well was prednisone- I could not stay on that obviously. Budesonide helped somewhat.
I had almost given up when I was told there is new evidence showing that my type of inflammation could have been triggered by damage done to my intestines when I had chemo many years earlier. I seem to remember there were a couple of other triggering conditions- abdominal trauma, gunshot wound. I may be wrong.
Since I now had a definite diagnosis, immunosuppressive treatment was an option.
Without a diagnosis it is wrong to treat with such potent drugs.

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