Patient Comments: Microscopic Colitis - Treatments

Question:

What was the treatment for your lymphocytic colitis? Submit Your Comment

Comment from: JMo, 35-44 Female (Patient) Published: July 09

I was diagnosed with lymphocytic colitis a few years ago but have had issues most of my life. It started getting really bad in my mid-30s. I had horrific cramps, and was in/out of the bathroom throughout the day and had some nausea. I realized I was lactose intolerant, so that has helped some. Triggers have been caffeine, spicy food, too much sugar, artificial sweeteners, and maybe gluten. I went off gluten for a month, but it's really hard to do! It helped my skin, but not entirely my bowels. Metamucil has been the best.

Comment from: Joy, 55-64 Female (Patient) Published: April 24

I was diagnosed with microscopic colitis after requesting a colonoscopy because my symptoms mimicked the symptoms of colon cancer. No cancer thankfully! I was put on Lialda which was working, but it was expensive! I was able to see the same results by reducing the dose to 1/2 tablet a day. I did some research to learn about natural treatments that I hoped would work since a low dose of Lialda was working. I learned that aloe vera juice is anti-inflammatory. I started taking 2 oz. twice a day, morning and evening. There are flavored varieties, but I buy Fruit of the Earth aloe vera juice (from inner gel fillet) and add an ounce of pomegranate juice. Metamucil greatly helps with pain management and I also take 2 oz. of kefir twice a day. I call these my morning and evening cocktails. If I eat spicy foods, I still experience a flare up, but if I'm careful with my diet, my cocktails are working!

Comment from: Wilma t., 55-64 Female (Patient) Published: November 29

I was recently diagnosed with microscopic colitis from biopsies. I have suffered with this condition almost 4 years now. I have lupus and have been on Aleve for years for pain and inflammation. I decided to get off the Aleve. I am taking turmeric for joint pain and white willow on a bad day. I am so much better it is unbelievable. And I am managing my pain with the turmeric twice a day. Be warned you will go through at least 5 days of agony with pain everywhere when you go off Aleve. Then it dissipates. Hang in there, it is worth it. I feel better and better every day now. Go to a health food store for the turmeric, I take Curamin extra strength. One in the morning and one in the afternoon.

Comment from: bmb, 65-74 Female (Patient) Published: July 01

I was diagnosed in 2012 with microscopic colitis. I went off all dairy and eliminated all artificial sweeteners. Just prior to the start of the colitis I was on Naprosyn (800 mg) for bursitis in my hip. I believe this was the trigger. I have not had any anti-inflammatory pain relievers since 2012 (not even an aspirin). I have been advised to use only Tylenol and only when really necessary. Imodium was key to resolving this condition. This is a lifelong journey and I believe we must all find our way, not always easy to do.

Comment from: AmyoftheLakes, 45-54 Female (Patient) Published: May 24

I woke up Monday morning (05/16/16) with severe vomiting. This was not too surprising as both my sons had been hit previously with norovirus infection that seemed to last one day only. Monday, I had nausea all day. I hadn't read the advice to stay home for up to three days so I took the day off to spend with my daughter on Tuesday, shopping and eating a light meal. I have not vomited again since Monday, but I have had the liquefied diarrhea. At least I could make it to the toilet. I worked again Wednesday but was exhausted. Thursday I worked a half day but even after a few hours' rest I could not go out to take photos in the evening as I was supposed to. Friday I worked approximately a half day. Saturday, I had to work throughout the day to make up for all I missed. I have been able to tolerate mostly bland foods still with regular dinner foods in small amounts only and except for a banana milkshake last night, I am staying away from dairy for the most part still, as well as anything too spicy, acidic. As my first and worst vomit came from last Sunday night's sloppy joes, I have an aversion to anything with ground beef at this time, almost a full week later. I am sure that will get better with time but I feel I won't be back to normal eating for several more days at least.

Comment from: Frances , 65-74 Female (Patient) Published: June 12

I have collagenous microscopic colitis. I have been on Entocort until November. Now I don't know what to do if it doesn't heal up and I am concerned. I have been to the clinic several times.

Comment from: Tdugan97, 35-44 Female (Patient) Published: November 15

I had a lumbar laminectomy 6 days ago on L2 L3. I am experiencing very sharp pain and numbness in my upper right leg.

Comment from: erica32, 25-34 Female (Patient) Published: May 06

I started having symptoms of colitis in May 2015. I believe it went on for 2 to 3 weeks before I went to my gastroenterologist. I was scheduled for a colonoscopy which came back with microscopic colitis as a result. I was put on Entocort and stayed on as long as my doctor told me, however within the week I felt back to normal. I was weaned off a little while after that and have been ok since.

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Comment from: Spice, 55-64 Female (Patient) Published: April 01

After having diarrhea for a year I was diagnosed with microscopic colitis. I was told that I could try Pepto-Bismol as a treatment but I chose not to take it. I experienced this condition for a few more years and my husband finally persuaded me to try psyllium fiber. He takes Konsyl and others take Metamucil. I chose to take fiber capsules. I have been taking them for about a week now and am very happy with the results. They really help to make my bowel movements easier and less messy!

Comment from: Jennifer, 45-54 Female (Patient) Published: February 12

I have had shingles now for 3 weeks and the pain is vile. I have seen online that vitamins B12, E and C really help, I will try anything. I suffer osteoporosis in my spine and this is bad enough but the pain shingles has left me in my left lung is just excruciating.

Comment from: patcher, 55-64 Female (Patient) Published: February 09

I have been suffering with chronic diarrhea for several years and taking up to 3 Imodium a day to control it. My family doctor suggested I try Align and to stop taking any ibuprofen or aspirin based products. In the interim I had a colonoscopy and the biopsy showed I have lymphocytic colitis. Well, the Align, a probiotic, really worked. I have not taken an Imodium since I started taking Align. I steer clear of ibuprofen. It has been 2 months now that I have been diarrhea free, so I will keep my fingers crossed. Based on my reading, a gluten and lactose free diet would be beneficial as well. Celiac runs in my family.

Comment from: karen, 35-44 Female (Patient) Published: January 15

I've been diagnosed with microscopic colitis (15 years ago). I have no medication as of now, as loperamide bunged me up throughout the day but kept me awake all night. I'm constantly on the toilet at least 10 or 15 times a day still, and I may as well say I have watery stools. I'm used to it and I live with it unless I'm on holiday, etc. I mentioned an allergy test but the doctor said I am allergic to almost most foods, hence my colitis. The only thing that has worked is steroids on a temporary basis.

Comment from: Barbara, 75 or over Female (Patient) Published: January 12

I was diagnosed as having microscopic colitis through a colonoscopy after months of diarrhea. I ruled out various foods (including dairy) but nothing worked. I've found that what does work for me is Metamucil. It's not just for constipation. It actually forms the stool and has eliminated diarrhea. I am now regular and normal without previous symptoms.

Comment from: Sunonme2day, 55-64 Female (Patient) Published: January 06

I give myself B 12 injections once a week and take probiotic VSL 3 daily. I have been sick with lymphocytic colitis for 3 years and almost feel normal again. Stress seems to bring on my condition more so than food. I do what I can to avoid stressful people and events.

Comment from: Dazie, 75 or over Male (Patient) Published: December 28

I was diagnosed with microscopic colitis about four years ago. I had constant diarrhea, and for many years before that on and off diarrhea that I blamed on IBS (irritable bowel syndrome). I had a colonoscopy and was told that I have microscopic colitis. I have been on a gluten free diet which has stopped the diarrhea, just once in a while I will have a problem. At that point I will use Pepto-Bismol which seems to help.

Comment from: Gin, 65-74 Female (Patient) Published: December 15

I had food poisoning followed by 10 weeks of diarrhea, and then pancreatitis which landed me in the hospital where they did a colonoscopy with biopsies. I was positive for lymphocytic colitis. I was sent home with pancreatic enzymes, loperamide, and probiotics. Diarrhea was somewhat controlled but my guts were in turmoil until I swallowed a big gulp of olive oil. I kept taking 3 or 4 tablespoons a day and after 4 days stopped the loperamide and things and I have been fine for a week now. Coincidence!

Comment from: bells, 55-64 Female (Patient) Published: October 02

I was recently diagnosed with microscopic colitis. I did a lot of reading and learned that gluten is often the catalyst behind the diarrhea. So I totally went gluten-free, as well as almost dairy free. Within 2 or 3 weeks the diarrhea ended, and I am feeling just about normal. I had lost about 25 lb. in 2 months with the diarrhea and now my weight is remaining stable. I don't eat any junk food, and never did, and didn't eat desserts or sweets so I really don't know how I ended up with microscopic colitis. At least it can be treated by diet, and not medicine.

Comment from: Miss P, 45-54 Female (Patient) Published: September 23

Five years ago I started having explosive watery diarrhea after everything I ate. I did not go to the doctor for 2 years. I'm a runner so this definitely hindered my hobby somewhat. I had a colonoscopy and was diagnosed with microscopic colitis. I wondered if this is the diagnosis used when they can't figure out what is actually wrong. I tried all the medicines and the only thing that made a difference was prednisone. However, I will never be on that horrible drug again. I am wondering what this is doing to my body. I have not lost or gained any weight. My hair is dry and brittle and often breaks and falls out. I do not know if this is a side effect or possibly hormonal now that I am in the menopause years. Although I have a good doctor probably the best in my large city, I am trying to get in with another gastroenterologist at a local university. I am hoping he doesn't want his own colonoscopy to look at. Yuck! That is something else I never want to do again.

Comment from: Stan, 75 or over Male (Patient) Published: August 27

I found the culprit on my own since the doctors didn't have any answers. My microscopic colitis was diagnosed several years ago at age 65ish. After a while I decided to have a good long look at the foods I was eating, so started to keep a journal. When I would have a flare I would look back at what I had eaten and what ingredients were in those foods. Lo and behold! MSG (monosodium glutamate) was the big bad culprit. I stopped eating anything with MSG in it and almost eliminated the problem entirely. Sometimes foods high in glutamates like tomatoes and tomato products like catsup or anything made with tomato paste can trigger symptoms, too. I've found that eating fresh (not canned or pre-prepared) foods are best for keeping the beast away.

Comment from: Ladybug, 65-74 Female (Patient) Published: July 28

I have microscopic colitis and was treated with budesonide. It seemed to help at first then stopped. I now take Lomotil to manage my diarrhea and some days I only have diarrhea once. I was having 6 to 8 trips to the bathroom and some during the night. I wonder now if it is going away or just giving me a temporary break.

Comment from: Twinkiltoes, 55-64 Female (Patient) Published: June 30

I was diagnosed with colitis and put on medications. Then I started a no sugar, no dairy, no fruit, and no carb diet. I went off my medications because now I am constipated. I'm not sure what it is I ate before that caused it. The only dairy I ate was cheese. Makes me worried about starting to eat again.

Comment from: 7hdui3, 45-54 Male (Patient) Published: June 18

After several years of diarrhea, I had an upper gastrointestinal (GI) scan that showed nothing, except the contrast moved through my system very quickly. My GI doctor prescribed cholestyramine, which doesn't work well in reducing cholesterol, but does have a side effect of constipation. However, it didn't really change my symptoms, so my doctor performed a colonoscopy. The results were clean, but after taking biopsies, I was diagnosed with lymphocytic colitis in February 2015. True to the literature, the doctor said causes and cures were unknown at this time, but he gave me some 30-day samples of EnteraGam, and I started to see improvement within days. It doesn't taste very good, so I asked my doctor if I could mix it with the leftover cholestyramine (citrus taste) and Citrucel (citrus). He told me to try it out, and let him know immediately if there were any problems. Nearly five months later, my system is working better than it has in years. EnteraGam is shipped from the manufacturer, and it costs about $50 per month. But I have found it to be a great value in returning me to normal, daily functions.

Comment from: phmmfg, 55-64 Female (Patient) Published: May 05

I was diagnosed with lymphocytic colitis 1 1/2 years ago, in December 2013, after a couple of years of occasional watery diarrhea and then a solid month of watery diarrhea that didn't respond to Lomotil, Pepto-Bismol, or any of the usual medications. It took a biopsy of my colon to confirm the diagnosis. I was on sertraline for many years, so I suspect that was the cause. Budesonide (Entocort) works great for me, but yes, it is expensive and I worry about the long term side effects of chronic steroid therapy. My bone density actually improved after my diagnosis because it kick started me into being more active and taking better care of myself. I avoid gluten and lactose just because it seems to aggravate cramping, even though I didn't test positive for gluten intolerance. Yes, it is awful to have this disease, but it is manageable and isn't fatal, so I try to stay positive.

Comment from: Martha, 35-44 Female (Patient) Published: May 04

In 2008 I took clindamycin for a sinus infection and after the last pill I started having severe diarrhea. Prior to that I never had any digestion/gastro issues whatsoever. I ate everything with no problems. Years of testing, medication, no eating, watching everything I put in my mouth, they finally diagnosed me with microscopic colitis in December 2014. I tried one month of Apriso, it helped but I experienced side effects. I had to take 4 days of probiotics recently and since then my colitis symptoms are back and seem worse (gas, nausea, diarrhea, cramping). Just miserable! I'm going to take another month of Apriso again to see what happens. My life is a roller coaster now and I just wish I could find a daily medicine that will help. I feel so unhealthy now and just want back my health.

Comment from: Living Life, 55-64 Female (Patient) Published: March 24

I had diarrhea for about a year before I was diagnosed with microscopic colitis six months ago. My gastroenterologist put me on EnteraGam which is a powder that I mix into Gatorade. If I take that religiously every day, I have normal bowel movements. I do still have occasional churning in my colon but it is not painful.

Comment from: maryk, 65-74 Female (Patient) Published: March 10

I had diarrhea and pain three years ago and stomach pain that went on. I was diagnosed through a colonoscopy with microscopic colitis. I was put on Entocort 3 times a day for one month, then 2 times, then once, for three months. I was symptom free for three years. After eating a raw steak it started again but not as severe. Another colonoscopy showed colitis but less severe so I am repeating the same treatment. After 10 days, I feel normal. I am going to watch my symptoms and hopefully if it reoccurs, I do this three month treatment every few years to keep it under control. I don't eliminate any foods and generally very healthy otherwise.

QUESTION

Bowel regularity means a bowel movement every day. See Answer
Comment from: mia, 45-54 Female (Patient) Published: February 17

I was diagnosed with collagenous colitis 15 years ago. I refused steroids, and mostly mitigated the chronic diarrhea with a gluten free diet. The diarrhea never disappeared, but the pains and gas were somewhat better (somewhat). Then I tried sulfasalazine but had severe stomach pain with it. Now, 15 years later I tried the Pepto-Bismol routine (8 tabs divided up to 4 times a day for 8 weeks). Well, it's working! I'm at week 8 now and about to go off, but I have had normal bowel movements for 2 months now; it's been so wonderful! I hope the effects last after discontinuing the Pepto-Bismol.

Comment from: gmanaustin, 55-64 Male (Patient) Published: February 04

I was diagnosed with collagenous colitis 2 years ago. I was able to control it mostly by taking budesonide. As soon as I stopped taking the medication, my symptoms would reappear. About 2 months ago, I decided to stop eating bread (mostly Oroweat Oatnut). I was eating sandwiches for lunch 4 to 5 times a week. Lo and behold, my symptoms have disappeared, not to mention some fat around my middle. I was tested for gluten intolerance in the diagnosis phase and it came back negative. So, I'm perplexed with this development but also very pleased.

Comment from: jinx, 65-74 Male (Patient) Published: December 26

I was diagnosed after colonoscopy and biopsies, with lymphocytic colitis (LC) 14 months ago after sudden onset of symptoms. Initially I was on Entocort but side effects were severe; headache, stomachache, and extreme fatigue. I changed to Asacol, and pretty much the same side effects. After 9 months of trying to find correct dosage I began to see a doctor of naturopathy. She put me on a dairy free, citrus free, and low acid diet. All of these things reduce inflammation in the body. Things improved immediately. Now after 6 months, I am drug free, managing the LC with diet and supplements. Energy has returned but is still not what it used to be. I have no headaches, stomachache, cramping, gas (which was excessive), constipation or watery stools. I feel very lucky. I know that a flare up is likely and I may need the drugs for a short while but for now life is good again.

Comment from: Susan, 55-64 Female (Patient) Published: December 05

I was diagnosed with microscopic colitis approximately 3 years ago. I had been having explosive diarrhea at least 7 times every day, I lost quite a bit of weight about 2 years ago. I had my colonoscopy and microscopic colitis was my diagnosis. I was told that maybe it was the ibuprofen I was taking. I tried all of the over the counter anti-diarrhea medicines, nothing worked. My gastroenterologist put me on the probiotic regimen and that did not word either. I now use dicyclomine with some relief. I am curious though, I also at times get very nauseous with flare ups, almost to the point I feel like I am going to vomit. With my last flare up I just did not have an appetite, this time however I am really nauseous. This is my second flare up in 2 years and I am hoping this just goes away.

Comment from: Stephanie, 19-24 Female (Patient) Published: October 21

I was experiencing heavy episodes of diarrhea after I turned 17 years old (I am only 19), which became a problem because I was still in grade school. My pediatrician ran every test she could in the clinic then referred me to a gastroenterologist but I had to wait until I turned 18 to see an adult gastroenterologist. After further questioning she went ahead and did a colonoscopy. She said nothing showed up on the visual inspection of my colon but my biopsy results showed I had colitis. I asked if it was any specific type, she only told me with time I will know because I am so young. Currently I am on Asacol, but the medication is very expensive.

Comment from: Dobby, 45-54 Female (Patient) Published: October 16

I was diagnosed with microscopic colitis in February 2012 and I reacted badly to the anti-inflammatory steroid I was prescribed. I then started to follow the FODMAP diet, designed to help people with food intolerances. My symptoms immediately improved and continued to improve over the next 12 months. If I deviate from the FODMAP allowed foods my symptoms return, particularly heartburn and diarrhea. Although FODMAP means I have to avoid many foods from all food groups I am still able to eat a few from each group, so have variety in my diet. It's not perfect but I prefer to avoid taking drugs for the condition.

Comment from: sandra, 65-74 (Patient) Published: July 14

My doctor put me on probiotics 3 times a day and my condition has improved at least 80%. He said he could not put me on the medication at this time and see how the probiotics continue to help my lymphocytic colitis. I feel like I have my life back.

Comment from: kW girl, 55-64 Female (Patient) Published: May 22

I was diagnosed with lymphocytic colitis in February 2014. I went on an 8 week course of Uceris. Within 24 hours my diarrhea had subsided. Six weeks after I stopped taking the drug my diarrhea returned, but I am now back on Uceris with the same result. Great drug but very expensive.

Comment from: Terry, 55-64 Female (Patient) Published: March 06

I was diagnosed with C. difficile colitis 6 months ago. Before I was diagnosed I had been feeling very poorly. I was experiencing overwhelming fatigue and diarrhea. I had gone to several doctors who said I was over worked and depressed and I needed to see a psychiatrist. It was a nightmare! I decided to see my gastroenterologist. The day after I saw my gastroenterologist I became very ill with a very high fever and I became dehydrated and had to be hospitalized. The diagnosis in the hospital was bacterial colitis which was treated with antibiotics. I was in the hospital for two weeks. About three weeks after I left the hospital I went back to my gastroenterologist and he told me I had C. difficile/microscopic colitis. He gave me hyoscyamine 0.125mg for cramps and suggested I use Imodium for the diarrhea and slowly introduce more solid foods into my diet. About 5 weeks ago I began to have the colitis symptoms again and went back to him and he put me on the low FODMAP diet. I have been on the diet and eliminated all gluten and lactose products from my diet and it is getting a little better. I no longer experience diarrhea but now I get constipated and have to drink 1/4 of a (10oz) bottle of magnesium citrate so I can have a bowel movement. I have lost 20lbs in six months. I also experience pain in the center and left regions of the upper abdomen as well as my upper and lower back.

Comment from: SusieQ, 65-74 Female (Patient) Published: March 04

Diarrhea came on suddenly last summer after a meal. I had already scheduled a colonoscopy before the problem began. Doctor diagnosed collagenous colitis based on biopsy. He prescribed Entocort for one month then had me reduce dosage and eventually stop to see if diarrhea returned. It did. I use Pepto-Bismol a few times a day to control sudden onset of diarrhea attacks. When the condition takes a turn for the worse, I go back on the Entocort for several days until under better control.

Comment from: Midge, 65-74 Female (Patient) Published: March 04

Having had colitis since early childhood before they could diagnose it, I am now 69 and feel I know a great deal about "my" colitis. In my 50s I finally had biopsy done and was diagnosed with microscopic colitis. No particular medicine helped, and I"ve been on many, but staying off of milk, most importantly off of sugars (natural or other) and all stimulants or irritants, excessive fiber, chocolate, and overeating has stopped the diarrhea. I eat some fiber cereal mixed with not so fibrous cereal at breakfast and that takes care of the constipation. If I"ve gone off my healthy foods I will get the diarrhea. I found one pill of 5mg/325mg Vicodin will stop the diarrhea and I"ve learned Pepcid AC relieves the gas almost immediately. I am careful with excessive ice cold drinks and try to avoid getting overheated. I do get symptoms under stress as my system seems to shut down as a way to protect itself. Then I eat lightly. This has made my life much more tolerable in regards to the IBD (inflammatory bowel disease). Sixty years with this condition has taught me a lot. Thank goodness I have a tolerant family as it has affected every part of my life. My lifelong colitis has lowered my IgG (immunoglobulin) levels, or white cells, so I receive once a month an IV infusion of white cells. I am so much healthier now.

Comment from: Jane, 55-64 Male (Patient) Published: October 15

I was diagnosed with lymphocytic colitis in 2010. I had chronic diarrhea for 4 months and ended up getting dehydrated and was put in the hospital for five days. On biopsy, it was diagnosed as lymphocytic colitis. I was initially put on Entocort and it didn't do much. I continued to have abdominal pain, cramping, and diarrhea. Currently I take one capsule of Entocort daily, dicyclomine and Imodium when necessary, and when I have a "flare" or relapse, I have to bump the Entocort, and Asacol up. I take three Entocort and six Asacol daily, along with the dicyclomine and Imodium when the cramping is bad and I have to go to the bathroom a lot. Usually after about two weeks it begins to calm down and I taper the medicines to maintenance levels. If I listen to my body carefully, I can tell when a flare is brewing.

Comment from: veryvegan, 55-64 Female (Patient) Published: October 08

I was diagnosed about a year ago with lymphocytic colitis. I've taken the Pepto Bismol treatment. It took about 8-9 weeks to put the diarrhea at bay. That lasted for about 5 months, then I got a slight flare-up and since I was about to travel was I given Entocort, which was very successful within 2 days. I started easing off after a week and am down to 3mg, 5 times/week, tapering to discontinue.

Comment from: donna, 45-54 Female (Patient) Published: August 24

I just recently was diagnosed with microscopic colitis. I have had bouts of explosive diarrhea for 20 years or more and have been told years ago that it was IBS or diverticulitis, or many other things. I always had to know where the closest bathroom was, or be able to pull off the road. Since the colonoscopy everything has been normal. I just hope it stays that way. So I can't see how the colonoscopy could of started it. It helped me.... Good luck!!

Comment from: 65-74 Female (Patient) Published: October 31

Well, I found something for lymphocytic colitis that keeps me pretty normal. Try Esdifan. It's a supplement I found online. It contains zeolite, which keeps absorbing water from the colon which in turn controls the runs! It is full of B vitamins, etc., very good for you. It gives you lots of pep, energy, etc.

Comment from: Groovyartgirl, 45-54 Female (Patient) Published: March 04

I was diagnosed 8 years ago and had chronic diarrhea for 5 years. I changed my diet, did Entocort but only had moderate relief. I started taking bentonite clay with some herbal fungicides and have been healing for the past 3 years with minimal episodes. I drank up to 8 cups a day at times, but it really worked!

Comment from: Louise, 75 or over Female (Patient) Published: February 10

I have used Entocort, and have tried Imodium for lymphocytic colitis. They help but how long should one use these medicines! I do not have pain or cramping, just uncontrollable diarrhea for months. Then it goes away sometimes for a year or more, then flares up again.

Comment from: Ginny, 65-74 Female (Patient) Published: October 08

I was diagnosed with lymphocytic colitis in 2007, after being diagnosed with chronic diarrhea. I finally had a biopsy of my colon lining. The treatment ordered was Pepto Bismol 4 times a day, and after 6 months of only liquid bowel movements I finally stopped losing weight and I had my first solid stools. It flares up intermittently and the Pepto Bismol usually stopped it in a day or two, but stress in my life exacerbates it, and Pepto Bismol has ceased to work any more.

Comment from: psalms18, 45-54 Female (Patient) Published: February 10

Hi just thought I would give my two cents on this topic. I have MC both with LC first then CC/LC. I tried the asacol, butrine, and the pepto tablets. The asacol made me so sick so quit, Butrine worked until I quit taking it, pepto worked for a while then my body just ignored it. Prednisone was the wonder drug but not a good thing to stay on. So started up after I quit steroids. I have had this going on 16 years. Mine is the liquid type, I have found quite a bit of relief with a gluten free diet and no milk (lactose) cheese ok and yogurt no. I did the probiotics before they were the new thing and it was just ok. Imodium doesn't work and I can take up to 5 or so and nothing but helps with the cramps. But I do notice that when I am not eating gluten I do not get the intense cramping. Yes I still have watery stools. I take easily digested vitamins and make sure I keep hydrated. Yes, I still get easily fatigued but learn to pace myself or be exhausted and I do mean EXHAUSTED. Hope this helps.

Comment from: roundman, 55-64 Female Published: December 01

Have microscopic (collagenous) colitis for a year and have had two bouts of pancreatitis 3 months apart which I am blaming meds for the colitis. Asacol and colozal. Asacol is what I was on for the 1st time and colozal only took 2 days of taking for the pancreatitis to happen. It is a flu-like aching, can't sleep well because of aches...if you experience this GO TO your doctor and get tested. I had a 4 day hospital day the 1st time and a 5 day stay 2nd time. I have also tried Entocort and it was great but came back after I stopped it (plus cost $1500/mo) Now on Lialda and am worried because it is similar to Asacol so am nervous about pancreatitis but maybe I got lucky. Still pretty expensive but not like Entocort (general Busenide is $1100/mo). This really sucks and so far no meds have really helped or slowed down colitis. If anyone gets lucky on something let us know. Also my Dr says cures for Crohns or IBS will not work because is totally different colitis.

Comment from: relieved, 65-74 Female (Patient) Published: September 26

I have had two years of urgent watery stools. With some unfortunate accidents. I went in for my colonoscopy and it was discovered that I had collagenous colitis. They thought I got it from taking daily ibuprofen. I am now on Idocort and have had the first normal bowel movement in a long time. I hope I am one of those for whom this is a short term problem. I will not take ibuprofen again as I did slip up and I had the watery stools for that day.

Comment from: Obie, 65-74 Male (Patient) Published: November 24

After 5 years of constant diarrhea and bloating I was diagnosed with lymphocytic colitis in 2013. Cause was 15 years of NSAIDs; Celebrex for my osteoarthritis. Medication helped occasionally but the arthritis pain is now unbearable and I have to choose between two evils; diarrhea or constant pain of arthritis. I am still unsure what path to choose.

Comment from: DANC, 55-64 Female (Patient) Published: October 13

I have had urinary retention for three years. I had the InterStim implanted with high hopes I could once again urinate on my own but it did not happen. My advice is to not hang your hopes on the InterStim device, it did not work for me at all. I had it removed since and use disposable catheters to this very day; I do not expect that to change in my life. It is awful to not be able to urinate on your own. Save your time, money and energy and try to learn how to accept disposable catheters as a way of life. It will limit your mobility and change your life dramatically, no other choice, sorry it is really bad. Good luck.

Comment from: Kricar, 35-44 Female (Patient) Published: August 12

I just met today with my new gastroenterologist and he feels I most likely have lymphocytic colitis but we will know for sure after my colonoscopy. I haven't been able to find much information on this so I really am happy to read your stories. Not happy you are suffering but happy you have found relief. I just bought a book on FODMAPS. My usual life of Imodium, Pepto-Bismol, and a diet of bananas and rice can't be it, so I will try this way of eating and see what happens.

Comment from: Lorraine, 55-64 Female (Patient) Published: February 20

I have lymphocytic colitis newly diagnosed. I was on Delzicol for a year for ulcerative colitis. After two months of diarrhea and losing 21 pounds I was put on budesonide EC 3 mg 3 once a day.

Comment from: Beatrice, 65-74 Female (Patient) Published: June 25

I have had daily, frequent diarrhea for several years now. Can have from 10-20 trips to the bathroom daily. I do not have pain with this but as some of you have said one has to continually think about where a bathroom is when out and about as accidents can happen! My gastrointologist believes I have microscopic colitis. I will be having a colonoscopy soon. I'm hoping that there will be a meds available for me that is not financially out of the ballpark. Because I have painful arthritis and degenerative disk desease, I take ibuprofen to try and help with pain and also Celebrex but do not use it often. I did find that recently when I had a bout with vertigo due to fluid in my inner ear that while taking Dramamine along with Allegra-D, I had NO diarrhea for 36 hours! I told my doctor this and am hoping that may be a clue to some type of medicine leading to reducing symptoms but don't believe one should take Dramamine on a daily basis.

Comment from: Angelbaby, 65-74 Female (Patient) Published: April 18

I've had colitis off and on all my life. Finally, I was diagnosed eight years ago with microscopic colitis after a colonoscopy. I think it is probably from daily ibuprofen for treatment of fibromyalgia. This is probably why people with fibromyalgia often have colitis. The only thing that works when it gets really bad is Entocort EC. I only take it when I absolutely must because of the price ($650 for 30 days). I am due for another colonoscopy this year and will ask for a full battery of tests to be sure it isn't gluten as well. I probably will try a lactose-free diet, but that takes out of my diet part of the little that I can eat right now during flare-ups.

Comment from: Too young for this, 35-44 Female (Patient) Published: March 14

I started having watery diarrhea when I was 32. I've suffered over the past four years with watery diarrhea up to 10-12 times a day. I've had two colonoscopies and an EGD. I was diagnosed with collagenous colitis. Entocort has worked wonderfully for me except my GI doctor says I can't stay on it long term. I've already lost bone density from taking it. I'm not sure what to try next.

Comment from: zbird, 65-74 Female (Patient) Published: January 03

I get watery diarrhea 10 times a day with extreme weakness and episodes of supraventricular tachycardia (very fast heartbeat). The doctor concentrated on my heart and said to keep a food diary and take immodium which did not work. Two months later the pain started again. I had a sigmoidoscopy and was diagnosed with lymphatic colitis. Five different prescriptions did not work. Generic entocort finally helped. I have lost 32 pounds. When I phased off the Entocort, the symptoms returned. The name brand of this prescription is $1200 a mont. the generic works for me at $400 a month.

Comment from: Virginia, 75 or over Female (Patient) Published: October 16

I have had diarrhea off and on for several years. Last spring I started having it once a week and then every other day. Conventional medicine did not help. After having a colonoscopy and being diagnosed with microscopic lymphatic colitis I went to a clinic that specializes in natural, holistic treatments. I was put on a strict lactose and gluten-free diet with low fiber and was given Zypan, DGL and Intestinal Repair preparation that contains glutamine and other natural ingredients, as well as a probiotic and a Chinese herb for the fatigue and faintness. The diarrhea cleared up within a week and I feel much stronger and have more energy. It has been six weeks and I feel great.

Comment from: Joy, 35-44 Female (Patient) Published: June 09

I was diagnosed with Lymphocytic Colitis when I was 34 after being told I had IBS for years. It was a relief to actually be diagnosed with something! I totally avoid all NSAIDs now. I would get terrible diarrhea when I used them (I didn't use them for long - say twice a month - not realizing they were making me worse!) I had long term diarrhea for a few years. I avoided fibre too. I seem to be Ok now (I'm 42), except when I get a gastro bug - which I tend to get worse than everyone else. Had a gastro bug for four weeks once and lost 7 kilos. Went to the hospital and they said they could do nothing for me. I cried for two hours!

Comment from: joeysgirl, 35-44 Male (Patient) Published: April 19

I was diagnosed almost a year ago with Microscopic Colitis after 7 years of chronic diarrhea. When I say chronic I mean, 18-20 episodes a day and up 2-4 times a night, IF it woke me up. When it didn't wake me up, well...you can imagine. I was convinced I had no choice but to live this way. I was constantly sick, exhausted, dehydrated, and couldn't gain weight if you paid me. I had been to a gastroenterologist after the first 2 months of diarrhea and was told it was "colitis, self limiting". In other words, "It'll pass. See ya in two years." After 7 years, I'm down to 95 lbs, and on the verge of malnutrition, and I followed up. He took 6 biopsies of my colon and all 6 were positive for microscopic colitis, even in the cecum. I've been taking Entocort and Colazol since the day he gave me the verdict. I gained 8 lbs the first month!!! I have not been able to stop the meds, however. every time I try, the diarrhea, nausea, cramping, and fatigue return within a week. Looks like I'm a lifer.

Comment from: lillyp, 55-64 Female (Patient) Published: May 29

I was diagnosed with microscopic colitis and have tried everything. The only thing that has saved my life is tincture of opium. After taking it for the last five years, my GI prescribed Entocort. It is a miracle but I am afraid I will need to take it the rest of my life (56 year old).

Comment from: SueZ, 55-64 Female (Patient) Published: February 10

I was diagnosed with LC winter 2011, fortunately within two months of onset. I have made significant progress by eliminating gluten and dairy, reducing fiber intake, taking Entocort (now down to 3mg every 3days), eliminating an SSRI med, all NSAIDS, and Fosamax. I have significantly reduced joint pain, despite stopping NSAIDS, including Celebrex. I believe this to be the result of eliminating gluten, at my doctor's insistence.

Comment from: mturn2, 35-44 Female (Patient) Published: July 29

I too have been diagnosed with Lymphocytic colitis and experience chronic constipation - not the water diarrhea as most seem to experience with this condition. I haven't been offered any solutions to this problem so I take a lot of simethecone for the awful gas build up that goes along with the constipation. Going on a year now and still have awful symptoms.

Comment from: Revanche, 25-34 Female (Patient) Published: July 22

I was just diagnosed with Lymphocytic Colitis. I went to the doctor because I go back and forth between constipation and diarrhea. Mostly constipation. I have gone as long as a week without anything and I stop being hungry. I have also developed sensitivity and swelling in my abdominal area. Colonoscopy showed no ulceration but the biopsies confirmed the diagnosis. My doctor says the constipation is from the swelling of the intestines blocking everything in.

Comment from: sick & tired, 55-64 Female (Patient) Published: May 19

I've had microscopic colitis for at least 30 years, and I've been on a lot of different drugs for this and with no avail nothings worked. Doctor I've been seeing for past 4, 5 years and he's wanting me off steroid entocort. So he's sending me to the hospital, see what they can do for me, sure hope a lot because. I'm tired of the crapping and of the pills.

Comment from: rag12, 65-74 Female (Patient) Published: May 04

I suffered with this for years and was finally sent to a gastroenterologist familiar with collagenous colitis. He prescribed 2 Pepto-bismal CHEWABLE tabs. 4 times a day during severe episode, then to taper off as needed. It has worked but it is much like walking a tightrope, as too many and constipation then too few and more liquid stools, but one can get some relief this way.

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