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!

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?

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.<br>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.<br>Thank you<br>SHIRLEY FOGGE PIAZZA

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.

Hi @3377, so sorry to hear about this, but I'm glad that you have reached out on Connect. I'm assuming that seven months ago, your GI doctor did labs and then a colonoscopy and biopsies, and the pathology revealed lymphocytic colitis. Have any symptoms gotten better or worse? When is your next follow-up with them? I would keep a daily journal of your dietary intake along with your symptoms and consider getting a second opinion as this is weighing on you and affecting your quality of life. Do you feel comfortable asking your primary care doctor to refer you to a different GI specialist? I concur with @kanaazpereira regarding considering surgery. Has your GI doctor suggested this as an option?

As background, last December I had a CT scan for something else, and it indicated thickening of the colon wall / suspected colitis. Subsequent labs were run for inflammation, C Diff, parasites, etc. to rule those out. The only thing that came back positive was inflammation. I then had a colonoscopy and all biopsies came back normal, but I continue to have mild abdominal pain every once in a while, and I avoid greasy foods because if I don't, I'm in the bathroom constantly. With that said, I continue to journal every day so that if my pain or diarrhea issues progress, I have info and a timeline to take back to my doctor.

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.