Lymphocytic Colitis

Posted by helengee @helengee, Jan 17, 2012

I have been diagnosed with lymphocytic colitis and I’m trying to pared down the list of foods I can eat that will minimize the adverse reaction in my colin. The medicine I’m on now (a steroid called Entocort) has severely affected my blood sugars (I am Type II diabetic). I wonder if anyone else has the combination of lymphocytic colitis and diabetes and how they are handling it?

You’ll find many people on the “Potty People” forum who can help you with your question. It is the best site for help with MC/CC/LC on the internet: http://www.perskyfarms.com/phpBB2/index.php 
Please login and introduce yourself.

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I’m on day 11 of entocort and so far have not had my blood sugars affected

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@katzee

I’m on day 11 of entocort and so far have not had my blood sugars affected

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I take entocort, 3 pills daily but continue to have diarrhea & very little energy.

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@petepat3234

I take entocort, 3 pills daily but continue to have diarrhea & very little energy.

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Hi @petepat3234 ,
I don’t know how long you have taken Entocort, but the diarrhea should eventually subside or your GI would have to re-evaluate. The fatigue is most likely a sign of the autoimmune inflammation. I had varying degrees of fatigue through the years – from needing to rest often to not having energy to get out of bed. Once I was “cured” the energy slowly returned.

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Hi @petepat3234,

I’d also like to invite @dval @spectec @adri55 @0687 @mindi @motherkat @tracy0129 @frozsquash to join this conversation with their insights about Entocort (budesonide). Could you share a bit more about yourself? When were you diagnosed? Besides the medication, how are you managing your symptoms? I look forward to hearing more from you.

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My experience with budesonide was for treatment of ulcerative colitis. I had used both the rectal foam (Uceris) and the oral, neither of which helped. The foam I had used twice, each for 6 weeks (twice daily for the first 2 weeks and then once daily for the remaining 4). It didn’t seem to make a difference, probably because I have pancolitis (UC affecting the entire colon). The oral didn’t make a difference either, so GI doc switched to oral prednisone, which I am still taking, but tapering down. I have also started the biologic, Entyvio, and have completed 2 of the 3 loading doses. It’s too early to tell if the Entyvio is helping; it may be the prednisone that has made a difference. I had been having 10-15 bloody severe diarrhea BMs daily and was losing a half pound a day! Within the past 5 weeks, I have stopped bleeding, stopped losing weight and am in the bathroom 2-4 times a day, which is significant! I have also started a plant based diet, which I am sure is helping too, but it’s too early to tell exactly what is helping the most. I hope this is helpful and wish you the best!

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I'm male, age 71, still working part time and fairly active on a daily basis. Other conditions are stable angina, mild hypertension, sleep apnea, and dry macular degeneration, none of which would affect the digestive system. Those conditions are controlled by medications, CPAP, and monitoring. I was diagnosed with LC in late May, after trying for 6-8 months to self-manage the symptoms. Main problem was regular bouts of severe diarrhea and 6-8 trips to the bathroom daily. Energy had become very low, although I never lost any weight. I initially thought perhaps the problem might be related to my travel outside the US (regular mission trips to Myanmar and India), but parasite tests have repeatedly come back negative. There was an incident a couple of years back with a microbial intestinal infection which, in retrospect, may have been the trigger for the eventual development of the LC.

The diagnosis resulted from analysis of biopsies taken during a sigmoidoscopy. Initially my GI doc prescribed 3 MG of budesonide daily. After 8 weeks and a little improvement, I returned to him for scheduled follow up. Turns out there had been an error somewhere in the initial communication between his office and the pharmacy, because the dosage was supposed to have been the standard 9 MG per day. I made a mistake in not questioning the dosage, and essentially lost most of the progress I could possibly have experienced during the first 8 weeks (lesson learned). I'm now 2 weeks into the correct dosage and I'd say my symptoms are 60% improved. The plan is to stay on the budesonide for the full 8 weeks and then begin a taper (all provided symptoms are gone, of course). So far I have had no problems with the budesonide, but there's still a long way to go.

I've also joined the "Potty People" forum http://www.perskyfarms.com/phpBB2/index.php &#013 and have received lots of good advice over there. I strongly recommend that group, along with Wayne Persky's excellent book – "Microscopic Colitis", in addition to this forum of course. I lean toward the idea that there is a strong connection between diet and MC/LLC/CC and am still trying to sort this all out. I did order the Enterolab tests, which helped me to identify a few potential food sensitivities, although my results didn't identify and definite or significant food immunological reactivities. For me, this testing is just another piece of the puzzle, as I expect I will eventually embark on an elimination diet (but at least the testing will have given me a bit of a head start)

Seems to me that if anyone with MC/LC/CC is looking for a magic bullet to solve the problem once and for all, their hopes are probably going to be dashed. I see this as probably a life-long issue and one that will always be accompanied by some uncertainties. I suspect that the focus will continue to be treatment the symptoms as they arise, while recognizing that the underlying cause(s) may be a moving target with little prospect of "curing" the condition.

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Is lymphocytic colitis an autoimmune disease? Once you’ve been diagnosed is it a lifetime condition?

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Hi @minnewaukon and welcome to Connect. You may have noticed that I moved your post to this existing discussion on lymphocytic colitis so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

I'd like to share this page form Mayo Clinic that discusses lymphocytic colitis (microscopic colitis): https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/symptoms-causes/syc-20351478

I'd also like to introduce you to fellow Connect member @spectrec and @petepat3234 as they have mentioned this in the past and may be able to offer you support.

Back to you @minnewaukon have you been diagnosed with this condition?

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Thank you, Ethan. Yes, I was recently diagnosed at Mayo via colon biopsies, although I’ve been symptomatic for years. Just chose to believe the symptoms would go away, and there was really nothing amiss 😜

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Hi @minnewaukon ,
I was diagnosed with collagenous colitis, which is similar to lymphocytic colitis, 10 years ago. Symptoms disappeared after treatment, but I was told it might return. So far nothing. However, I developed another form of gastrointestinal autoimmune illness- also finally gone after treatment. Good luck with your treatment- would you mind getting back to us later about how you are doing?

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@kanaazpereira

Hi @petepat3234,

I’d also like to invite @dval @spectec @adri55 @0687 @mindi @motherkat @tracy0129 @frozsquash to join this conversation with their insights about Entocort (budesonide). Could you share a bit more about yourself? When were you diagnosed? Besides the medication, how are you managing your symptoms? I look forward to hearing more from you.

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I to would like to know this information, I have lymphatic colitis and was proscribed budesonide er, but insurance only gives me 56 pills in a 180 day and always denies approval because they say it's not FDA approved for my systems. When this happens and I don't take the meds it Interferes with other medication absorption. Not sure what to do.

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