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

Posted by mpratto @mpratto, Nov 30, 2016

I have been fighting Lymphocytic Cholitis for a long time and it is getting worse. I really need some advise on how to live with this.

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@stellawf - Welcome to Mayo Clinic Connect.
We’re you just diagnosed with collagenous colitis? Any treatments?
I am one in this group that has been diagnosed with collagenous colitis.
I’m in remission now and hope to satay there!
Can you give us more information on your current condition?

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@astaingegerdm I’ve had it for more than 35 years, but was finally diagnosed only about 10 years ago. Part of the reason was research wasn’t started for looking for different types of colitis until the late 1980’s, and a rush wasn’t put on it (mostly women get it). Also, the only way to reach a diagnosis is by biopsy of the colon lining in several places. Anyway, What is important to know is it isn’t going to kill you, though it may feel like it at 3:00 am. Try to identify what the main trigger is for your flare ups. For me it’s usually stress, heat stress at the top of the list. When I discovered that, I went into remission and stayed in remission for years. As I got older, I began to have other, major high stress events in my life so it came out of remission again. Sometimes it flares up for no reason at all. My flare ups usually last about 2 weeks then it goes back into remission, but it will happen again the next year. It could be a change in age. Sadly, I’m out of remission right now and most likely will drop at least 20-30 pounds over the next 2 weeks.

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