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.

I am not sure how much help I can give you. I have Irritable Bowel w/diarrhea as well as Lymphocytic Colitis. Because of the IBD, I can't eat a lot of green veggies – lettuce, asparagus, broccoli, artichoke to name a few. Beans, whole milk products (milk, ice cream & yogurt). Fried food, too much red meat the list goes on. Oddly enough, I am not skinny, although I was all through high school until my 50's. I try to eat smaller portions (so have to "lose" smaller amounts if it doesn't agree with me). I know it's frustrating but you really just have to use trial and error & give yourself a treat sometimes knowing the consequences. Hope this helps some.

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@mpratto So sorry you are having trouble finding the right foods to eat. Can you contact your Dr's office and have him refer you to a dietician nutritionist? This way insurance should help cover the cost of visiting her.

After my surgery when they removed 1 foot of my colon. I had trouble eating for the longest time. It took quite awhile for my system to get back to normal. Everything I ate made me sicker than dog..

I went and saw a nutionalist ,and she gave me all kinds of options that actually worked. My local grocery store Publix has nutionalists. She even put together a shopping list. Went as far as, helping locate the food item in the store.

What a difference it made eating the right foods to help me heal better..

I wish you the best.

Liked by Lisa Lucier

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I have had Microscopic Colitis for over a decade now. Besides diet, taking Metamucil seems to help.

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Welcome @riorita, and thanks for sharing your insight.
I thought you might also wish to view this discussion, https://connect.mayoclinic.org/discussion/microscopic-colitis-2ced1d/ about microscopic colitis on Connect.

According to this article from Mayo Clinic, autoimmune diseases such as rheumatoid arthritis or celiac disease may cause microscopic colitis http://mayocl.in/2bmyFqr ; here’s additional information from the National Institute of Health https://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/microscopic-colitis/Pages/facts.aspx

@riorita, do you also have an autoimmune condition?

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@cindyc

I, too, have suffered for over 5 years with lymphocytic colitis, and nothing helps. I am seriously depressed, but don’t what comes ftirst “the chicken or the egg” @kristimotch

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Awwww … I hear you. Perhaps it's time for a second opinion? Is that a possibility? When I took Entocort a few years back I recall it too a couple or three months before things straightened out.

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@shandar

I was just diagnosed. Diet suggestions?

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Absolutely go gluten free and possibly lactose free.

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I was just diagnosed. Diet suggestions?

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Welcome to Connect, @shandar and @marciah,

You may notice that I moved your discussion and combined it with this existing discussion on lymphocytic colitis as I thought it would be beneficial for you to be introduced to other members with similar experiences.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I’m tagging Mentor @travelgirl as she may be able to offer more details regarding diet and nutrition for this condition. I’d also like you to meet @ekoltun6, @marymar, @cindyc, @helengee, @mjgarr, @mkzpony, @kristimotch, @ediep, @karne, @mpratto, who have all shared their experiences and insights about lymphocytic colitis

@shandar, @marciah, may I ask if you could share some more details? How are you managing the symptoms at present? Besides diet, does medication help? I look forward to hearing more from you.

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@mkzpony

I have Celiac as well s MC, I got prescription from my Dr, for Budesinide, only to find out it would cost me $1050.00 for 3 months!!!! I went to Canada Drug Company and now I pay $95.00 for the same 3 months. I am so much better using this drug, and I can afford it as well!

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When my budesonide got too expensive, MedicareRX cut me off! I get the same thing from a compounding pharmacy for the same price the co-payment used to be.

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question, i have lymphocytic colitis just diagnosed. while waiting for my visit withe the dr for a good explanation i was wondering if taking a probitic is productive?

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It can be for some people. My gastroenterologist explained to me that I could try probiotics if I wanted to – they help some and make no difference to others. They seemed to help me for a while, then I saw no real differnce so I stopped taking them as they are expensive.

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After daily episodes of urgent diarrhea since April, I was just diagnosed with collagenous colitis. The diagnosis came after colon lining samples were taken during a colonoscopy. I am awaiting an appointment with a Mayo dietician. Meanwhile, the doctor asked me to omit magnesium supplements and use Imodium. Also I am supposed to use a tablespoon of Metamucil in water twice a day. Will the low FODMAP diet help? Have any of you had success with it? Is it hard to follow it and stay on it? I will appreciate your comments. Thanks. elmay

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@elmay – I was also diagnosed with collagenous colitis after weeks of constant diarrhea. Since it was an autoimmune disease I was told many rx drugs could cause this. Even withdrawing these drugs did not help. I was then treated for a month with methotrexate. Diarrhea disappeared. Interesting that my diet wasn’t really discussed with me. I guess my diet was fairly simple already.
I hope you will feel kind of normal soon!

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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 to you connect with a pharmacy in Canada? Is there a certain one you recommend?

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@elmay

After daily episodes of urgent diarrhea since April, I was just diagnosed with collagenous colitis. The diagnosis came after colon lining samples were taken during a colonoscopy. I am awaiting an appointment with a Mayo dietician. Meanwhile, the doctor asked me to omit magnesium supplements and use Imodium. Also I am supposed to use a tablespoon of Metamucil in water twice a day. Will the low FODMAP diet help? Have any of you had success with it? Is it hard to follow it and stay on it? I will appreciate your comments. Thanks. elmay

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I've had the diagnosis of Collagenous colitis for some months. I've been on Budesonide — but kept having UTIs and antibiotics, so eventually the budesonide didn't work. Somewhere in that time, i was told to stop methotrexate, so it's interesting to hear that methotrexate helped someone! I'm now in limbo, with a Dec. appointment with Mayo, and an appointment with my PCP Tuesday Nov 3, so that will be a fraught day in a couple of ways! My digestive health people seem out of their depth. They handed me the FODMAP diet but without many instructions, so I've been following it but the diarrhea persists. Googling shows some evidence that FODMAP is not the diet doctors recommend for collagenous colitis, since it was developed for IBS. In any case, I'm finding this confusing, and am eager to hear more expert advice. Meanwhile, I do think that diet may be the best way to control my colitis — but don't think I've been getting a good education on what that diet should be. Whew! This has been almost a year for me — and I'm feeling depleted and worn out by trying to get through this.

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