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

Hi @aithnie, I'm tagging @travelgirl on this discussion as she has experience with h. pylori.

@colleenyoung thanks for the tag.
Hi @aithnie

Very interesting feed.
H-pylori that miserable bacteria infection. It made me feel like my insides were on fire. I seriously thought I had gotten poisoned that is how sick I felt. It took months to feel better. They also diagnosed me with Gerd at that time which was out of control. I still take 40mg of omeprazole 2 times a day. This was the only medicine that has helped.

My stomach does get super gassy at times. Which looks like one of the side effects.

The only good thing about H-pylori for me is it saved my life by finding the Cecum cancer early. The GI Dr. decided to do both an Endoscope and a Colonoscopy. Which is where they found an ulcer with a flat cancerous polyp.

You need to hang in there with H-pylori. It takes months to feel better...

In all the years of intestinal misery I have never had an upper GI or have seen a gastroenterologist. Thank goodness I have an appt with Mayo in mid-August. I have other medical issues and I am wondering if I've already had 4 mega dose sessions of B12 and 3 mega dose sessions of vitamin D - why haven't the drs. ever checked for deficiencies in other vitamins and minerals and not ordered upper GI - could it be malabsorption? Oh, well guess I'll find out in the near future what the problem is.

I just have being diagnosed. After 4 years of cronic diarrea. Is there any hope with medication?

I have inflammatory colitis and I take Lialda 2 capsules morning and night. If I leave the house, I take Imodium at my doctor's suggestion. This gives me a little more confidence out in public as I have had accidents. I have never heard of Lymphocytic colitis but I have B-cell Lymphocytic Leukemia CLL/SLL. I wonder if there is a connection. While taking Lialda, I no longer have diarrhea and painful stomach cramps. I hope you find some relief soon. Be blessed.

Hello @elisag

Welcome to Mayo Connect - we are glad that you have joined our online patient support group. I see you were just recently diagnosed after 4 years of chronic diarrhea. On some level it must be a relief to be able to put a name to these uncomfortable symptoms. We would like to get to know you better, so please share if you are comfortable doing so, a little more about yourself. For example, how did you finally arrive at this diagnosis? Did you see a particular type of specialist or have specialized testing?

Teresa

I have LC/MC. It's been around a year and a half. I was on Budsesonide, but, now I am off. I found out that I am Gluten intolerant. I have been of any Gluten now for about a month and I feel really good. My D has calmed down. To get more info go to the microscopiccolitisfoundation.com web site. It is very helpful. I think you will learn a lot. I sure did.
mjgarr

Hello @elisag,

I'd like to add my welcome, and thank you so much for joining us on Mayo Clinic Connect.

Here's some information from Mayo Clinic:
Microscopic colitis (inflammation of the large intestine or colon) causes persistent watery diarrhea. There are two subtypes of microscopic colitis:
– Collagenous colitis, in which a thick layer of protein (collagen) develops in colon tissue
– Lymphocytic colitis, in which white blood cells (lymphocytes) increase in colon tissue
Since collagenous and lymphocytic colitis may be different phases of the same condition, symptoms, testing and treatment are the same for both subtypes.
You can read more details here: http://www.mayoclinic.org/diseases-conditions/microscopic-colitis/home/ovc-20192308

I'd encourage you to view this discussion about microscopic colitis so that you can meet other members talking about similar symptoms: https://connect.mayoclinic.org/discussion/microscopic-colitis-2ced1d/

I see that @mjgarr and @Gray have already joined this conversation with their valuable insights...thank you.
I'm also tagging @ekoltun6, @marymar, @cindyc, @helengee, @mjgarr, @mkzpony, @kristimotch, @ediep, @karne, @mpratto @lija @aithnie @shosh37, and Mentor @kdubois who might be able to shed some light by sharing their experiences.

@elisag, would you share a bit more about yourself? How have you coped with the diarrhea thus far? What diet changes did you have to make? What has helped?

Inhave ben diagnosed with collagenous colitis but am having trouble with find the right kind of food.

Hi @larryberberich,

Welcome to Connect. You may notice that I moved your discussion and combined it with this existing discussion. I thought it would be beneficial for you to be introduced to Connect members who have discussed a similar condition.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones' experiences.

Here’s some information from Mayo Clinic:
Microscopic colitis (inflammation of the large intestine or colon) causes persistent watery diarrhea. There are two subtypes of microscopic colitis:
– Collagenous colitis, in which a thick layer of protein (collagen) develops in colon tissue
– Lymphocytic colitis, in which white blood cells (lymphocytes) increase in colon tissue
Since collagenous and lymphocytic colitis can be different phases of the same condition, symptoms, testing and treatment are the same for both.
You can read more details here: http://www.mayoclinic.org/diseases-conditions/microscopic-colitis/home/ovc-20192308. Meanwhile, I'm certain that @3377 @mjgarr @mpratto @mkzpony @lija @aithnie @cindyc @ekoltun6 and others will also join in this conversation.

@larryberberich, is this a recent diagnosis? Are you taking any medication to reduce inflammation? Diet plays such an important role with colitis, and I'm confident you will get more insight from fellow Connect members; we look forward to getting to know you.