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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@elizabeth1944 - It is such a terrible disease. Mostly because treatment is not straight forward. As I understand it, the treatments used are not specific for collagenous colitis, but drugs used for other autoimmune GI diseases. My initial bout with collagenous colitis resolved, but later on I developed symptoms of another autoimmune GI disease. At Mayo different approaches were tried, including diet. Budesonide helped, but eventually I went on immunosuppressive drug which so far has worked.
However, it was very rough on my body/ health.

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Recently been given Losarta HCTZ for high blood pressure. Does anyone know if the diuretic in this can cause a flare-up ?

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@carolinefaye Do you mean "Losartan"...with an n at the end? ... what you listed is a combination of 2 drugs for 2 purposes.. Lately I have been taking that in 2 separate pills... it was combined for years... The Losartan is to relax the veins to allow blood to flow easier... the HCTZ is supposed to allow you to make more urine to get rid of excess salts ...Ken

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@carolinefaye

Recently been given Losarta HCTZ for high blood pressure. Does anyone know if the diuretic in this can cause a flare-up ?

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@carolinefaye - As I mentioned before I had collagenous colitis which is very similar to lymphocytic colitis. Certain medications were more prone to cause the inflammation than others. I was taken off meds one at a time, but no change. Hctz was one of them. It was definitely not one of the common ones such as aspirin.

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@ken82

@carolinefaye Do you mean "Losartan"...with an n at the end? ... what you listed is a combination of 2 drugs for 2 purposes.. Lately I have been taking that in 2 separate pills... it was combined for years... The Losartan is to relax the veins to allow blood to flow easier... the HCTZ is supposed to allow you to make more urine to get rid of excess salts ...Ken

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Yes, Lorsartan HCTZ is what I am taking. Did you have any problems with it?

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@ken82

@carolinefaye Do you mean "Losartan"...with an n at the end? ... what you listed is a combination of 2 drugs for 2 purposes.. Lately I have been taking that in 2 separate pills... it was combined for years... The Losartan is to relax the veins to allow blood to flow easier... the HCTZ is supposed to allow you to make more urine to get rid of excess salts ...Ken

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Interesting. My husband was given Losartan after his Carotid surgery on his neck, he was told it was to keep his blood pressure low which it already was. I figured they just wanted it lower than it was. What you said about it relaxing the veins to allow blood flow makes so much more sense. Thank you.

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@mkzpony

Does your insurance cover the expense, as mine was going to charge me $1050.00 3 months. I now purchase in Canada for $97.00

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How do you purchase them and insure they’re legit? Ty!

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I was diagnosed with microscopic colitis last month. I really don’t want to take steroid so I’ve been managing with diet and changing my PPI to a non PPI. This came out of nowhere, I think secondary to a virus as I was super fatigued just before this started. Also I had CV19 early 2020 so there may have been underlying inflammation occurring.

Any thoughts on managing without steroid? Ty.

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@mjzd - I’m sorry to hear that you were diagnosed with lymphocytic colitis. I had collagenous colitis- very similar.
It is in the autoimmune category. It could very well have been triggered by a virus and even the COVID-19.
How are you feeling now? What are your symptoms?
Some people manage without steroids and maybe make diet changes. Everyone is different, it seems.
When I was diagnosed I was brought into remission with methotrexate- immunosuppressive- over a month.
Later on I got somewhat different autoimmune intestinal disease- Prednisone on and off helped until I took immunosuppressive med for a few months and cleared up.
It sounds as if you can wait and see- depending on the severity of your symptoms. Let me know how you are doing!

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@lija

To answer your question, I am watching my diet, excercising, drinking more water and less coffee. No creamer which really gives me problems! I eat lots of salads and vegetables. My doctor advises if I am going to eat them, to steam or microwave instead of raw! Even salads! (Well, I haven't tried salads that way yet!). No skins or rough vegetables. No lactose or histamine releasing foods for awhile or artificial sweeteners except Stevia. Use Mega Spore probiotic (50 billion). Eat chia seeds or psyllium husk and ground turkey breast instead of beef (no red meat). No bread, instead corn tortillas, rice, potatoes, or quinoa. Popcorn for snacks. This is info I received at Mayo. I have just started but am willing to try anything they think will help!! If anyone has any things that help them, please let me know!

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I have been diagnosed with Collagenous colitis have been in remission for 3 years and my dr wants me to get on butesonide also 180 tablets in 90 days
I’m doing fine on activia probiotic and psyllium husk
I’m afraid the steroid will accelerate my progression as I have read abstract of this drug and it states that more relapses after starting drug
From Canada drugs it is 165,50 but at Walmart it is almost $2660

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