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.

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Profile picture for boy4 @boy4

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

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Sadly yes but low dose (10mg generic crestor). Until I added Magnesium L-Threonate supplement, the statin left me frustratingly constipated and even chewing benefiber gummies every night wasn’t enough for a daily routine. That’s solved now, So I’ve added antidepressant and statin back to my regiment without relapsing the colitis.

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Profile picture for boy4 @boy4

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

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I have collagenous colitis and can't seem to taper off the Budesonide. On my third attempt now, with a taper scheduled to start at the end of this month. My dental hygienist has lymphocytic colitis and has discovered that sugar alcohols cause her to flare. These are sweeteners like sorbitol, erythritol, etc. so if you are still ingesting those you may want to stop.

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Profile picture for boy4 @boy4

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

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Yea they’re nasty stuff. Monk fruit is the exception I think.

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Profile picture for boy4 @boy4

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

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I had a bout of it several years ago. Discovered very belatedly that it was caused by a prescription med for GERD, the name of which I've now forgotten. Switched to Pepcid and had the same problem, though to a lesser degree. Am extremely careful with that med, only use it when in extreme esophageal distress.

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Profile picture for bayhorse @bayhorse

I had a bout of it several years ago. Discovered very belatedly that it was caused by a prescription med for GERD, the name of which I've now forgotten. Switched to Pepcid and had the same problem, though to a lesser degree. Am extremely careful with that med, only use it when in extreme esophageal distress.

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Yea all of the PPIs - Nexium was the one I was on .. Prilosec is another. Plus NSAIDs like Ibuprofen, and SSRIs like Zoloft.

I was on every offending category.

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Profile picture for pb50 @pb50

Oh sorry. A lot of research has been conducted about microscopic colitis - both lymphocytic and collagenous. A key learning revealed that many cases were associated with specific medications and over time the research refined these to be NSAIDs (like Ibuprofen ), SSRIs (specific antidepressants such as Sertraline), PPIs (such as Nexium), and less common drugs such as Statins.

I stopped all those when I was diagnosed. I have since reintroduced SSRI because alternative antidepressants just weren’t effective . And luckily it didn’t cause a relapse. I switched to Pepcid for GERD and know I cannot reintroduce ibuprofen without relapse.

Hope that’s helpful.

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I agree with your findings. I was taking 6 to 8 ibuprofen per day for many years for back pain along with many courses of antibiotics for chronic UTIs. My gastro doctor thinks that could have been the cause of my MC. I took budesenide for several months and have had no flare-ups. I also have no food restrictions. Maybe I'm one of the lucky ones. I feel blessed. But with no guarantee that I couldn't have another flare-up. Good luck to all whom are still suffering with this nasty diagnosis.

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Profile picture for boy4 @boy4

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

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Pepcid daily for years was the cause of my lymphocytic colitis (as per Mayo Dr). Budesidine helped, but Mayo Dr's don't want me on it regularly due to its long-term effects. I try managing with foods; it's tough but I'm not one for medicating my 79-year-old body other than Imodium occasionally. Hang in there; I'm grateful this surfaced while I was in my 70's and not in my 50's.

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Profile picture for boy4 @boy4

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

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I’m just going to add that I hope you are all using goodRX to get a Much Better price on Budesonide.

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Profile picture for pb50 @pb50

Have you priced it on GoodRX and SingleCare? You’d be surprised what a difference it can make. I take a drug twice a week that 2 mos worth is over $300. But the good RX price at a grocery store pharmacy is $67.

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Don't you have to have qualifying income for GooodRX and SingleCare?

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Profile picture for boy4 @boy4

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

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Nope

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