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Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » My story - lymphocytic colitis



07-18-2013, 10:59 AM   #1
rhiire
 
Join Date: Jul 2013
Location: Devon, United Kingdom
My story - lymphocytic colitis

Hey, I am 21 and was diagnosed with lymphocytic colitis.
My diagnosis came following being admitted to hospital over 20 times in the space of a year, for at least a week each time.
I was suffering from tachycardia, hypokalemia & chronic dehydration and diarrhea.
My specialist made it his priority to get my heart rate down, and deal with my other problems accordingly, finally getting to the diarrhea.
There were days when I would go to the loo over 30 times a day, I was constantly exhausted and suffered from overwhelming craps/pain in my abdomen & lower back.
I was diagnosed following the study of 6 biopsies from a colonoscopy.
Since being diagnosed life has been hell, instead of my symptoms getting better over time, they've worsened. To the point where I am no longer able to work, I cannot even remember the last time I had a decent nights sleep, I'm scared to leave the house incase I cannot make it to the toilet in time. I'm in constant pain, not to mention the discomfort and bloating.
But worse than any of these, I find is the embarrassment. I am lucky enough to have an extremely supportive partner, who has stood by me through all of this. Like I mentioned previously I am only 21 and I feel like no one understands just how much this is affecting my quality of life.
Over the years I've tried numerous drug therapies:
Budesonide
Prednisolone
Asacol
Azathioprine
Loperamide
Codeine
Colestyramine powder
Fybogel
Not to mention the different diets, I've tried lactose free, gluten free & I'm now on the FODMAPS diet, I'd never heard of it before and I've only been on it for 3 days, and haven't yet noticed a difference, but I'm praying to god it works.
It's got to the point where I'm also on anti-depressants alongside my regime of tablets everyday, and I feel like it's just never going to end. I just want to live a "normal" 21 year olds life, be able to go out to work, drink if I want too, eat what I want, sleep through the night & not live in constant fear and shame, is it really that much to ask?

Last edited by rhiire; 03-13-2014 at 07:45 PM.
07-19-2013, 01:54 PM   #2
Lanz
 
Join Date: Jun 2013
Location: Upstate, New York
I am sorry to hear about the struggles you have been going through. I am also in my (late) 20's and was just recently diagnosed with lymphocytic colitis. Still undergoing testing due to symptoms not improving. It is a struggle each day and some days are better than others, but when it is bad... it is bad. I hear your frustration with wanting to do normal everyday activities that you see other people doing. I hope you are able to find some relief and support.
07-19-2013, 03:58 PM   #3
SN8888
 
Join Date: Apr 2013
Do a search on microscopic colitis and pepto bismol...there is some regimen people use where they take a bunch of chewable pepto every day for a month or two (look it up...I might have the details wrong).

A very low carb diet (slightly different than FODMAPS) and saccharomyces bouldarii could possibly be helpful.
07-06-2014, 05:38 PM   #4
iriechic
Senior Member
 
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Join Date: Jul 2013
Location: St. Petersburg, Florida

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I was diagnosed w/LC at 32 but began having D 1-2x/day at 29. I totally feel your pain. This disease needs a cure because it definitely gets in the way of leading a "normal" life. All my best. I know this was posted a while back so hopefully you are feeling well now!
08-07-2015, 02:31 AM   #5
danialys
 
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Join Date: Jul 2015
Location: New York
I completely understand having to deal with LC at a young age, even more so than you actually. I am 15, still attempting to push through High School with insane extreme pain every day. I get what you're dealing with 100%
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