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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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@stellawf

What are you doing while in remission?
I’m in remission and do not want to start a steroid while in remission
Doesn’t make sense to me
I don’t want more relapses if activating budesonide will make me worse
I’m comfortable right now w probiotics and psyllium husk and activia
I did go to my family dr who said that her patients that have this take butesonide to stop it and that it was an instant ceaser or stopper of diarrhea so not to worry if traveling or away from home
I asked her why this GIGuy wants to drown me in this steroid and was told it was to redesign my colon which is risky
I need another GI second opinion and was hoping I could see Mayo Clinic or FaceTime appt to
Still searching for skills that match my history

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Replies to "What are you doing while in remission? I’m in remission and do not want to start..."
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 18, 2021

@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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