• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hello!

Hello everyone! My name is Courtney and I am 25 years old. I have dealt with chronic, uncontrollable diarrhea for years. I spent many years relying on Imodium AD to control my symptoms. In 2009, my husband and I conceived our first child and my symptoms completely vanished for the duration of my pregnancy. Shortly after having my son, my chronic diarrhea returned with a vengeance. I was no longer able to control my symptoms with OTC medication. I had a colonoscopy in November of 2010 which was not performed by a gastroenterologist, but rather a "surgical specialist". The results of my colonoscopy were "normal". My PCP prescribed Bentyl which not only did not work, but also almost completely sedated me. Then we tried Lomotil which worked sometimes and then had no effect other times. I was finally referred to a gastroenterologist who performed an endoscopy, which was normal. My GI doc also spent a year trying to track down my colonoscopy results. The surgical specialist who had done my colonoscopy claimed that he had no record of my procedure.

In the meantime I completed several Siliac panels and tried a gluten free diet, all to no avail. I was then treated for bile salt-mediated diarrhea and had to take Cholestyramine, which was horrid and did absolutely nothing for my symptoms. After a year of searching for the results, my GI doc was finally able to track them down and found that the biopsies from my procedure showed an increased number of lymphocytes in my colon. I have now been diagnosed with lymphocytic colitis for several months. I take Entocort on a very irregular basis as it REALLY screws with my moods, makes me feel incredibly confused and has caused me to plummet into a depression on several occasions. I've tried the Pepto-Bismol therapy which didn't really seem to work for me. My GI doc says the only other option for me is Prednisone which would cause even worse psychiatric side-effects. So I'm just trying to live the most normal life possible without using medication the majority of the time... which can be very difficult.
 

David

Co-Founder
Location
Naples, Florida
Hi there Courtney and welcome to the community.

I've been diagnosed with Lymphocytic Colitis as well, so I feel your pain and frustration. It sounds like the surgeon really dropped the ball, that's terrible :(

*hugs*

I'm personally not on Entocort as I'm trying to manage things without medication but I've certainly been tempted a couple times. Is it controlling your symptoms at all?

We have a subforum dedicated to Microscopic Colitis (which Lymphocytic Colitis is a subtype of) located here under the General IBD forum if you'd like to join us.

All my best to you.
 
Thank you, David.
As far as controlling symptoms Entocort is a miracle drug. I just can't live with all of the side-effects. They really interfere with my personal relationships and I can't put my family through my constant mood swings, anger and depression. I will definitely check out the microscopic colitis forum. :)
 
Top