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mpratto
@mpratto

Posts: 1
Joined: Nov 30, 2016

Lymphocytic Colitis/Collagenous Colitis

Posted by @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.

REPLY

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

Hi @mpratto,

I’m so sorry that you are going through this; lymphocytic colitis can be debilitating, both physically and emotionally, but I want to assure you that you have come to the right place to find some answers.

@ekoltun6, @marymar, @cindyc, @helengee, @mjgarr, @mkzpony, @kristimotch, @ediep, @karne, do you have any insight and information that might help @mpratto?
Since LC is a form of Microscopic Colitis, I would also encourage you to visit this discussion thread on Connect: http://mayocl.in/2gHxHqq

@mpratto, could you tell us a bit more about yourself? How have you have managed this disease thus far?

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!

Liked by Deena

Tagging into this conversation so I can follow it. My local doctors are trying to determine if I have colitis; just had colonoscopy today.

I am joining as I was diagnosed with lymphocytic colitis at Mayo five months ago. I was prescribed budesonide 3 mg. It has helped. I have just returned to my doctor. He says I will probably need to take this for the rest of my life! I am now down to 1 cap. every other day.

@lija

I am joining as I was diagnosed with lymphocytic colitis at Mayo five months ago. I was prescribed budesonide 3 mg. It has helped. I have just returned to my doctor. He says I will probably need to take this for the rest of my life! I am now down to 1 cap. every other day.

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Hello @lija, welcome to Connect. Thank you for jumping in to the conversation on lymphocytic colitis for your first post on Connect. We are glad to hear that the budesonide has helped.

Other than the medications, what other life adjustments have you made to cope with your diagnosis? Are you managing the colitis in any other ways than medications?

@lija

I am joining as I was diagnosed with lymphocytic colitis at Mayo five months ago. I was prescribed budesonide 3 mg. It has helped. I have just returned to my doctor. He says I will probably need to take this for the rest of my life! I am now down to 1 cap. every other day.

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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

@lija

I am joining as I was diagnosed with lymphocytic colitis at Mayo five months ago. I was prescribed budesonide 3 mg. It has helped. I have just returned to my doctor. He says I will probably need to take this for the rest of my life! I am now down to 1 cap. every other day.

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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!

My supplemental insurance pays part. Good to know about much cheaper in Canada. Thanks!

@kdubois

Tagging into this conversation so I can follow it. My local doctors are trying to determine if I have colitis; just had colonoscopy today.

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Colitis is easier to treat.

@kanaazpereira

Hi @mpratto,

I’m so sorry that you are going through this; lymphocytic colitis can be debilitating, both physically and emotionally, but I want to assure you that you have come to the right place to find some answers.

@ekoltun6, @marymar, @cindyc, @helengee, @mjgarr, @mkzpony, @kristimotch, @ediep, @karne, do you have any insight and information that might help @mpratto?
Since LC is a form of Microscopic Colitis, I would also encourage you to visit this discussion thread on Connect: http://mayocl.in/2gHxHqq

@mpratto, could you tell us a bit more about yourself? How have you have managed this disease thus far?

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My Dr. has me on Budesonide. I get the drug from a Canadian drug store. It has been about 1 year since I was diagnosed with LC. It has taken a while, but I am getting better. Just hang in there. Be sure your Dr. is in the know about LC.

@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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I was diagnosed with lymphocytic colitis over 7 months ago…I was having approx. 30 spells of diarrhea each day and was passing so much blood that I needed iron infusions….doctor that did infusion said if I had come there just one week later, I would have died. I’m on my 2nd round of Entocort (very expensive) and still having diarrhea….I am taking 4 lomotil each day and food still goes right through me. I really don’t think the Specialist knows what to do for me! I am depressed and don’t know what to do anymore!

@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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Hello @3377,

I’m so sorry for what you are going through, but I want to let you know that we are very glad you’ve joined us here on Connect.

I’d like you to meet @ekoltun6, @marymar, @cindyc, @helengee, @mjgarr, @mkzpony, @kristimotch, @ediep, @karne, @mpratto and one of our Mentors @kdubois, and I sincerely hope they will join in with some insight and share their experiences.

@lija, you recently mentioned that Budesonide (Entocort) helped you some; do you have any suggestions for @3377?
Here is some detailed information from Mayo Clinic, about various treatment recommendations for this kind of colitis: http://mayocl.in/2pJVRFm

@3377, how are you managing your diet? Have you considered any surgical options?

@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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I will try anything at Mayo Clinic. I moved from NY over 2 years ago and this area of FL has made me worse without health options. You have a fabulous reputation and I need your help ASAP.
I AM VERY MEDICALKY KNOWLEDGEABLE ABOUT MY MEDICAL NEEDS…FMT….SANOFI PASTEUR AND I ARE CLOSE. I know more than the MDs. Sad but true.
Thank you
SHIRLEY FOGGE PIAZZA

@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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Hi @shirleyfoggepiazza,

Thank you for all the support and information you’ve been offering. Please note that I removed your personal email and address from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option. Thank you for understanding.

Shirley, if you would like to make an appointment at Mayo Clinic you can call or request an appointment online here: http://mayocl.in/1mtmR63.
If you call the number on the webpage, they will ask questions to help direct you to the best specialist.
The telephone number for Mayo Clinic in Florida is 904-953-0853

I wish you the best of luck.

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