Your tips on how to live with Lymphocytic Colitis/Collagenous Colitis

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.

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.

I was diagnosed with lymphocytic colitis 6 yrs ago and last year collagenous colitis was added, as well as diverticulosis so I understand your frustration. I found some relief through diet. I can eat in small amounts cane sugar, pure maple syrup, raw honey, and raw fruit. I cannot eat any gluten (wheat, rye, oat, corn, semolina, tapioca - that is in flour, bread, cake, biscuit, wheat pasta, couscous, beer, malt vinegar). No soy, soya, tofu, soy lecithin, Worcestshire sauce, or MSG. No dairy - milk, cream, butter, cheese, casein, or whey (can handle goat milk). No beans, peas, guar gum, peanuts or cashews. No chicken eggs, duck eggs are no problem for me but they are expensive and hard to come by. No potatoes, tomatoes, eggplant, bell peppers (hot peppers seem to be no problem for me). Raw vegetables e.g. salad which I miss. No high fructose corn syrup or aspartame. The only oils I can tolerate are coconut, olive, and walnut.

Hi @aithnie,

Welcome to Connect. Thank you so much for joining in and sharing your history.

Lymphocytic colitis can be so debilitating, both physically and emotionally; here is some more information from Mayo Clinic, about this kind of colitis: http://mayocl.in/2pJVRFm
I hope @mpratto @cindyc @ekoltun6 @mjgarr @mkzpony and others will return with their insights, as well.

If I may, I'd like to introduce you to @epvb,@sodonnell, @shosh37 who have discussed collagenous colitis, and would also sincerely encourage you to view this conversation,"Muscular Dystrophy & Diverticulitis" http://mayocl.in/2rTRzJU, where you will meet @gailfaith, @dbwhitted and one of our wonderful Mentors, @hopeful33250.

@aithnie, it's good to know that your diet provides some relief; do any medications help?

Hello @aithnie and let me add my welcome to Connect. We are glad to have you join out online patient support group and thank you for your post about lymphocytic colitis, collagenous colitis and diverticulosis. It is just remarkable that you have found a way to help control your symptoms with diet. I have had three surgeries for a rare form of cancer in the upper digestive tract (NET/carcinoid) and also have diverticulitis so I understand how important diet can be in staying well and comfortable. From doing a little research, I see that this is a rare disorder. If you are comfortable doing so, please share with us how this diagnosis came about. Had you been having symptoms for a long time? We look forward to getting to know you as you share your story with us. Teresa

I have had issues with my colon for decades - when I was a teen they called it spastic colon; then it was just my gallbladder which was removed. Later doctors said it was irritable bowel syndrome. In the 90's I was either constipated or had explosive diarrhea and first experience with fecal incontinence.. The doctor said it was a vitamin B deficiency. All quiet for over a decade with constipation/diarrhea still bothering me if I ate fatty foods (perhaps certain restaurants/fast food joints didn't change their cooking oil as often as they should). Six years ago everything flared up big time, white blood cells soaring, diarrhea many times a day and the humiliating bowel incontinence was back to the point I did not want to leave the house and did not know what to eat or not. A colonoscopy was performed and the doctor decided to take 8 biopsies and all showed lymphocytic colitis. Treatment as Pepto-Bismol. Thank you North Dakota doctor. I used the internet to research microscopic colitis and eventually found a book through Amazon - "Microscopic Colitis - What Really Causes Microscopic Colitis, Celiac Disease, and other Autoimmune Diseases?" by Wayne Persky. Also check out Dr. Kenneth Fine (www.finerhealth.com).
If I do not cheat on my diet, do my Hatha Yoga for stress reduction, drink plenty of good water (ro), walking it stays in remission. Last year their was a lot of stress in the family, plus eating out too many times and the disease came roaring back; I could not get it to go into remission. The doctors here decided to do another colonoscopy - yeah I now am the happy recipient of another microscopic colitis - collagenous. No treatment other than to reiterate the taking of Pepto-Bismal and watch what I eat. Nothing has improved so I contacted Mayo Clinic just a couple of weeks ago for this medical problem as well as several others and will be going to Consultative Medical Practice in August.
Just a few days ago back to the doctors and was finally tested for H.pylori and it came back positive so I'm on mega antibiotics and miserable; however in the aforementioned book, bacteria is mentioned as a possible precursor to microscopic colitis. H. pylori bacteria testing has never been checked and I understand this little bug can live in the stomach for years and years. Why don't doctors automatically check patients when there is a bowel issue?
Anyway, I'm sorry for being so wordy and look forward to any comments regarding this and other digestive problems like choking while swallowing liquids and sometimes just normal spit.