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

Where are the folks with Collagenous colitis
I want to get support from them please
I’m not experienced enough to know how to get there

@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?

Yes to you for responding
In May 2017 I became quite ill w diarrhea and with a number of bad medical decisions I stayed sick until Dec of 18
After a antobiodic I went into remission for 3 years doing nothing w diet or drugs.I do not take drugs and have never done so when it came back in Jan if this year I had to have another colonoscopy but this time I had the dr to examine my tissue microscopically and came back w diagnosis of colitis
After starting colestibul for only 2 weeks and steadily using daily probiotics Metamucil and activia I went to being fine
Dr called and wanted to put me on butesonide and I freaked out when I was doing fine
Went to see him and he intimidated me w persistence of it is going to come back
He wouldn’t answer my questions nor counsel me but just push the drug
So I ordered it but I’m not taking it cause I have not received it
I want a second opinion and sent papers to Mayo but nothing or no one has contacted me
Thks

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

@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?

No official diagnosis, but my mom has CC and I have the exact same symptoms. Started having diarrhea after being hospitalized with Sepsis in May. When it didn’t go away doctor did blood work to rule out C-diff and other issues. Blood work was normal. I’m now on a six week road trip with my newly retired husband and have been struggling with diarrhea and stomach pain.

@kbiederbeck - Welcome to Mayo Connect!
It must be very unpleasant to be on a road trip in your condition.
What do you take now to control it? Imodium? I also took Peptobismol. Try to keep up with the fluids if you are losing large amounts of diarrhea.
When you get home you should probably see a Gastroenterologist.
My CC was diagnosed after having a biopsy.
Can you get back to me later on when you know more?

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?

I have never heard of allergy to probiotics, but sometimes it’s other components added to the probiotic -or any other drug- that sets off the reaction. It looks like a very angry rash!

It was misery for at least 2 months due to the buildup of whatever the chemicals in my system
Imagine what 150 steroids over 3 mos would have done to my body