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Your tips on how to live with Lymphocytic Colitis/Collagenous Colitis

Digestive Health | Last Active: Dec 23, 2023 | Replies (116)
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@astaingegerdm

@stellawf - I totally agree with you that there is no need for steroids if you don’t have symptoms. After I was diagnosed I was treated for 4 weeks with an immunosuppressive medication. That was all. I was told that it may return, but no need to keep taking drugs.
Steroids will cause other problems in itself.
This colitis is not like Crohn’s or Ulcerative Colitis.
I agree on a second opinion to learn more about your current test results from the colonoscopy.
Were you in contact with someone at one of the Mayo locations? How long has it been since you sent your papers?

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stellawf | @stellawf | Jul 23, 2021

I applied 3 months or more snd sent all my paperwork from drs office and I never heard another word from Mayo
I did get confirmation from 2 other drs who said do not take steroids as I’ve been fine since Feb had colostomy in March and diagnosed in April with CC
However I’ve been taking probiotics and Activia and Metamucil since Feb and doing fine but
I broke out on terrible rash itching and whelps that were making it impossible to sleep or concentrate
Finally I narrowed it down to probiotics and now I can’t take that anymore but it has not been easy to get this out of my system
I have two rare disorders
CC and allergy to probiotics which allergist said he had never heard of
I am doing fine GI wise with Metamucil and hoping it will keep me healthy
Anybody had a reaction to probiotics?
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