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.

@aithnie

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.

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

@aithnie

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.

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@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.

@elisag

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

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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.

Hello, I am new to this group. As a teen, I was told I had a spastic colon, later, they started calling it IBS-D. In 2006 I was diagnosed with GERD, a hernia and the bottom "flapper" of my esophagus no longer worked so I underwent a Nissan Fundoplication. That procedure wraps a portion of your stomach tightly around the esophagus to keep the acid from going back into the esophagus. On the down side, I now have difficulty swallowing and must periodically have a balloon dilatation to stretch it back out. For that, I take Pantoprazole SOD 40mg twice a day. In October of 2016, after several months of watery, explosive diarrhea 10-12 times a day, a colonoscopy was done specifically to look for Microscopic Colitis. I was diagnosed with Lymphocytic Colitis. I was started on Budesonide 3mg caps x3 a day. That stopped the watery, frequent diarrhea but my skin became very fragile and thin. I was changed to Lialda 1.2Gm 2 tabs twice a day. These are horse pills and very difficult to swallow. It has slowed the diarrhea to 3-4 times a day, depending on what I eat but the bowel consistency is very soft to loosely formed. Silly me, I thought I was going to get back to relatively normal bowel movements. I have arthritis in my neck, back & hands. My hands started swelling and hurting. I couldn't make a fist. My internist sent me to a rheumatologist because I had a high-ish ANA test. More tests and more drugs. While I don't specifically have rheumatoid arthritis or lupus, she believes it is an autoimmune thing related to the Lymphocytic Colitis. She has me on Cymbalta 60mg for the pain, Predisone 5mg & Plaquenil 200mg twice daily for the inflammation. My hands are much better but I am having severe hot flashes. I have gone from taking 4 meds a day to all of this stuff. I was told to consider the Mediterranean diet but, because of the IBS, there are no leafy vegetables that I can tolerate, several fruits and nuts that are triggers as well. I had an endoscopy Monday to dilate my esophagus and take a few biopsies and my doctor (I regularly see his most excellent PA) told me that the way my bowels are now are my new normal. I am okay with that but I hate taking all of these meds. I worry what they're doing to my body. It's nice to find people who understand and are going through this as well. Thanks for listening.

@gingerm

Hello, I am new to this group. As a teen, I was told I had a spastic colon, later, they started calling it IBS-D. In 2006 I was diagnosed with GERD, a hernia and the bottom "flapper" of my esophagus no longer worked so I underwent a Nissan Fundoplication. That procedure wraps a portion of your stomach tightly around the esophagus to keep the acid from going back into the esophagus. On the down side, I now have difficulty swallowing and must periodically have a balloon dilatation to stretch it back out. For that, I take Pantoprazole SOD 40mg twice a day. In October of 2016, after several months of watery, explosive diarrhea 10-12 times a day, a colonoscopy was done specifically to look for Microscopic Colitis. I was diagnosed with Lymphocytic Colitis. I was started on Budesonide 3mg caps x3 a day. That stopped the watery, frequent diarrhea but my skin became very fragile and thin. I was changed to Lialda 1.2Gm 2 tabs twice a day. These are horse pills and very difficult to swallow. It has slowed the diarrhea to 3-4 times a day, depending on what I eat but the bowel consistency is very soft to loosely formed. Silly me, I thought I was going to get back to relatively normal bowel movements. I have arthritis in my neck, back & hands. My hands started swelling and hurting. I couldn't make a fist. My internist sent me to a rheumatologist because I had a high-ish ANA test. More tests and more drugs. While I don't specifically have rheumatoid arthritis or lupus, she believes it is an autoimmune thing related to the Lymphocytic Colitis. She has me on Cymbalta 60mg for the pain, Predisone 5mg & Plaquenil 200mg twice daily for the inflammation. My hands are much better but I am having severe hot flashes. I have gone from taking 4 meds a day to all of this stuff. I was told to consider the Mediterranean diet but, because of the IBS, there are no leafy vegetables that I can tolerate, several fruits and nuts that are triggers as well. I had an endoscopy Monday to dilate my esophagus and take a few biopsies and my doctor (I regularly see his most excellent PA) told me that the way my bowels are now are my new normal. I am okay with that but I hate taking all of these meds. I worry what they're doing to my body. It's nice to find people who understand and are going through this as well. Thanks for listening.

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Hello @gingerm, have you tried taking a probiotic? My mom.. just turned 90 was having the diarrhea problem for months and her doctor did all sorts of test and came up with no reason (she did have her gallbladder out years ago. So could have been something she was eating. I tried to get her to do a food diary to figure out if certain foods triggered it, but she would not do it.) I bought her Align probiotics and she was back to normal within a few days after taking them. I have been taking them myself since about 2008 after my husband's cousin suggested them. I had tried cheaper ones, but they did nothing for me. My son tried the Align and they gave him bad stomach cramps. Try and see what works seems to be the thing to do. Just adding yogurt (with live cultures) may be enough to help. My brain has gone blank on other food probiotics. Adding a probiotic may actually help you eliminate other meds you are taking. Diarrhea can be a side effect of many medications. You might check side effects of the ones you are taking and talk to your doctor about alternatives. I hope you find something that helps you.
Zaroga

I have. Probably 10 years ago my doctor suggested I try Align. He said he'd had patient's either swear by it or it didn't help at all. I used it for a year or so & then stopped as I didn't think it was helping. But I'm going to try it again. As my doc said, it can't hurt. Thanks for your help.

@gingerm

I have. Probably 10 years ago my doctor suggested I try Align. He said he'd had patient's either swear by it or it didn't help at all. I used it for a year or so & then stopped as I didn't think it was helping. But I'm going to try it again. As my doc said, it can't hurt. Thanks for your help.

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@gingerm you might need to try different probiotics. They all seem to have different ingredients. I tried the Member's Mark from Sam's Club and it did not work for me. There was another one that was suggested to me, but I cannot pull the whole name out of my brain. Super was the first part of the name. It gave me horrible stomach cramps, but others said it worked for them better than Align. Each of us came with unique bodies.. none exactly the same and what works for one person may not work for the next. Some people do well with just the probiotic foods.. like the yogurt, kefir and such. I'm not fond of yogurt, but did eat a lot of it when I was transitioning from a feeding tube to real food. Some people take prebiotics too, but I have not investigated them to see what they do. Please, do check out your medications to make sure they are not causing or contributing to the problem.

I am being treated for collagenous colitis with steroids. The doctor never gave me A diet to follow so I was just eating whatever I ate before. My diary I was not going away. Then I found out that you must eat only soft vegetables, no caffeine no sugar and I don’t know what else I could eat ?! I am a very thin person as it is and I am afraid that I am going to start losing a lot of weight. I need a diet and I can follow besides just rice, and stuff vegetables. Could you please help me? I am at my wits end. Ever since I’ve been eating these blanb foods I’ve been getting better but the diet I have is so limited that I know I’m going to start losing a lot of weight

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