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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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tenor | @tenor | Jul 27, 2023
In reply to @marthurs "This is my life. Had a nissen fundoplication and hiatal hernia repair in December got c-diff..." + (show)
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This is my life. Had a nissen fundoplication and hiatal hernia repair in December got c-diff from the hospital. Had 3 good weeks. Non stop diarrhea for over 7 months. In the meantime was diagnosed with Lupus (had a blood clot in 2016 was trying to get off blood thinners because Arthritis was so bad and I couldn’t take anything due to being on thinners). Finally had colonoscopy revealed lymphocytic colitis. I feel like I should have just kept eating tums my whole life and took my chances getting cancer instead of having the nissen. I’m sure having lupus and not being diagnosed till 47 didn’t help but that surgery feels like the start of all things bad in my life. I am forever changed and not for the better. Getting a hysterectomy in September. Who knows if that is connected to all the madness. Thank you for sharing your story.

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So sorry to hear, keep us posted and much good luck!!

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44tiredof19 | @44tiredof19 | Dec 23, 2023

Vitamin C maybe calms my lymphocytic colitis. Thoughts?

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boy4 | @boy4 | Apr 2, 2024

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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pb50 | @pb50 | Apr 2, 2024
In reply to @boy4 "I have been dealing with this for over a year taking budesomide off and on,has anyone..." + (show)
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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 the sister version of microscopic colitis - collagenous colitis -

When you say you take Budesonide on and off, how long was your first course of it? Mine was 3 months, stepping down from 9mg a day to none.

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boy4 | @boy4 | Apr 2, 2024
In reply to @boy4 "I have been dealing with this for over a year taking budesomide off and on,has anyone..." + (show)
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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Mine was three months also,tapering down.im on my third course of it,I went 5 weeks off of it this last time,then i started having flare ups again..my doctor wanted to order something that was going to cost me over $400.00 for one month,and I couldn’t afford it.
D

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pb50 | @pb50 | Apr 2, 2024
In reply to @boy4 "I have been dealing with this for over a year taking budesomide off and on,has anyone..." + (show)
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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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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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pb50 | @pb50 | Apr 2, 2024
In reply to @boy4 "Mine was three months also,tapering down.im on my third course of it,I went 5 weeks off..." + (show)
Profile picture for boy4 @boy4

Mine was three months also,tapering down.im on my third course of it,I went 5 weeks off of it this last time,then i started having flare ups again..my doctor wanted to order something that was going to cost me over $400.00 for one month,and I couldn’t afford it.
D

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Have you tried stopping the known medication triggers?

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boy4 | @boy4 | Apr 2, 2024
In reply to @boy4 "I have been dealing with this for over a year taking budesomide off and on,has anyone..." + (show)
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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You would have to explain that.

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pb50 | @pb50 | Apr 3, 2024
In reply to @boy4 "You would have to explain that." + (show)
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You would have to explain that.

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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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boy4 | @boy4 | Apr 3, 2024
In reply to @pb50 "Oh sorry. A lot of research has been conducted about microscopic colitis - both lymphocytic and..." + (show)
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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Were you taking a statin? I do take one of those.

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