Life with Microscopic Colitis: Managing Holiday Travel

Posted December 29th, 2011 by

You may have heard of inflammatory bowel disease (IBD), but have you heard of microscopic colitis?  One of several conditions under the IBD umbrella, this chronic, inflammatory disorder of the colon (aka the large intestine) can cause watery diarrhea and abdominal pain.  It gets its name from the fact that microscopic examination of the intestinal tissue is required to diagnose it.

A Snapshot of the Microscopic Colitis Community at PatientsLikeMe

While less severe than other forms of IBD, microscopic colitis can cause considerable discomfort.  Combine that with the stress, long hours and unpredictability of holiday travel, and you can imagine the challenges.  What do our 24 members with microscopic colitis (80% of whom are female) have to say about this annual ordeal?  Here is a sampling of their stories and advice:

  • “Yes, only people with colitis know how important a bathroom is!  I am so glad to have found others with this problem.  When I talk about it, nobody knows what it is. I have to ride to Chicago at the end of this month, and it is a five-hour drive.  It makes me so nervous to be in the car for that long. I am already stressing over it. Thank goodness it is my son taking me there so I can say pull over fast.”
  • “I reduced my caffeine (coffee), that seems to help somewhat, but I have flare ups.  I also have bladder issues.  I also had colitis for quite a long time before being diagnosed.  About the bathroom thing, I know all the bathrooms en route too, and I sleep closest to the bathroom. (Actually when were looking for a house, that was a requirement for me to have a toilet/bathroom next to me.)”
  • “There is a gas station, convenience store, or restaurant at almost every exit. If you explain why you need to use their bathroom, they usually let you. My GI specialist also has me on Colestipol, which is much better than the Imodium-type drugs. The Colestipol I only have to take twice a day, and it is much more effective. I can usually avoid eating anything before leaving, and usually don’t have a problem with trips that long.”

For those with microscopic colitis or other forms of IBD, going to grandmother’s house for the holidays can be quite a different story.  Fortunately, you’re not alone.  At PatientsLikeMe, we have 27 patients who report IBD, and more than 4,400 members subscribed to our Intestinal and Digestive Health Forum.  Need a little support this holiday season?  Log on to PatientsLikeMe to share and learn with those who can truly relate.


47 Comments

  1. I have collagenous colitis which is kept under control with diet, combined with Sulfasalizine and Metamucil twice a day. I’ve heard it’s not advisable to fly with this chronic ailment. Is that true?

  2. My wife has microscopic colitis. She is 66. She has been on and off a steriod perscription for 3 years and all it seems to do is cause weight gain. We have heard of a natural remedy called Amp Floracel. Has anyone heard of this product, or tried it yet, or have you heard of any other natural product that would be helpful? The situation is getting serious and we need your help!!!
    Thanks, Glenn.

  3. IV had mc since I was 13 I’m now 21 the docters think I’m crazy at how much I say it hurts it’s almost unbearable. At times IV tried pills remidies diet nothing helps right now I’m in a terrible. Flare 🙁 the hospitals. Don’t help nor do docter visits

  4. I was just diagnosed with MC. I am 71. I just got over a month of diaerrhea. I realize I need to watch my diet. But I must ask, my daughter is a scrub nurse and has an opportunity to talk with a lot dr. A couple G.I. Dr have told her that there is no such thing as MC that dr tell you that cause they don’t really what wrong with you. I am confused . I know I have intestinal problems not sure anymore. All the books or websites I read don’t match my diet needs. HELP

  5. I’ve noticed that stopping the caffeine intake has only temporary effects on my colitis

  6. I’m 23 and I have been diagnosed with collagenous colitis 3 days ago. I have had chronic watery explosive diarrhoea my whole life, even as a baby. I jut got used to the diarrhoea but recently it got worse. The d was still there and still the same but I was feeling ill more than usual and I get weird headaches. When I get headaches they feel weird:
    dull but noticeable pain and make me feel foggy, dizzy and lightheaded. After doing some research I’ve realised that it’s dehydration causing the headaches. Even though I drink enough to keep me going throughout the day it prob isn’t enough. Recently I noticed my symptoms were far worse each morning. I’d just have to get on with it and try and ignore it so I could start my day. Eventually I couldn’t take it because I was going back and forth to the toilet 3 times straight after I’d been. I’d go then not feel well and have to lie down then get back up etc.
    Changing my diet doesn’t help anything, sometimes I feel dependant on caffeine because it helps with my tiredness and headaches. I’ve recently gotten over insomnia but it seems to be back again. Also, I absolutely hate going to public toilets because of the number 3s and because it’s embarrassing. (I didn’t tell anyone about it because I didn’t know what it was and all i knew was that I had diarrhoea. Only my immediate family knew.) I’ve learned to control it and it’s never usually that bad during the day that I have to immediately go to the toilet. Mostly after I eat and if I’m at home I go straight to the bathroom especially if I’ve had a big meal. I get bloated easily and my tummy rumbles as if I’m hungry constantly. I’m 23 but people always say I look so much younger, like I’m 17 or 18.
    Since I don’t know much about this and haven’t met anyone else with it
    I have a few questions:

    1)
    Does anyone else with CC have the same or similar symptoms as me?

    2)
    Do you look younger than you are?
    Don’t know if looking younger is to do with the collagenous colitis or if it’s just me but would be great to find out.

    4)
    Is there anything you’ve changed in your lifestyle or found during any research that has helped or made things worse?

    5)
    I’ve been prescribed for a drug called budesonide, has it helped anyone or made things worse?

    To anyone who has any form of mc or ibd I know how you feel. If you have chronic number 3s and are sick of it, go for a colonoscopy. The prep is the absolute worst part but it is 100% worth it when you find answers. Hope this helps someone and hugs to anyone going through it. It’s a horrible thing to live with, I know how you feel, ask to see a specialist and ask for a colonoscopy and hopefully things will turn around.

  7. I was sick with watery diarrhea, nausea, vomiting and weight loss for 3 months while it got sorted out what I had, and it was Microscopic (Collagenous) Colitis. Budesonide is truly a miracle drug. I am tapering now after 6 weeks with 9mg, one week with 6mg and now 3mg. I am worried about flare ups as I know even with diet -I am on low fodmap and low residue diet- they will occur. I came to this website looking for how to handle flare ups. Pepto Bismol, Immodium or more Budesonide> I still have a half bottle of the expensive capsules.

  8. I would add to my comment above, in 2 weeks I have travel and 3 days of dog shows… there are so many factors to worry about including being expected to be at the show 7 am to set up, having to bring my own food for some of the meals… just handling it away from home. My hotel roommate knows what I have but I even worry, what if she is using the bathroom when I need to!

  9. I was diagnosed with CC last May. I tried everything natural and at times I could get it to stop but then in days or a few weeks it would be back. I thankfully have very little pain but the uncontrollable is exhausting. I have been on Budesonide now since July 2014 and OMG it took it right away. I started out taking 3 pills and the doctor (Naturopath by the way) said after a week if the diarrhea slows then start taking 2 pills and then 1. I have been taking 1 since the end of August 2014. He wants me to start taking every other day and see how I do. I have had one problem just a few weeks ago ( I actually think I got a bug from my grandson) and I thought it was back but after 2 days it went away. I am extremely careful with my diet. No grains at all! Very very low sugar and I’m careful with fruits and other foods that tend to cause me to not feel good. I basically did this with the elimination diet which is hard but important because lots of foods you are eating can cause flare ups as it is irritating and those foods are different for all of us. The Low Fodmap diet is good for this. My Naturopath started me on this right away. You can find a printable version online. Hope this helps! I will say I am frightened to go off the Budesonide as I have let somewhat of a normal life for a while now. I do have more frequent BM’s but normal. I can live with that.

  10. Katie,
    I was just diagnosed with MC this week but I have learned a lot in the past few months.
    I had diarrhea so bad and I was feeling so weak and tired I could hardly walk. My doctor had me get a blood test to see what my potassium level was and I had to go into the hospital immediately. Normal levels run between 3.5–5.3 mine was 1.1 she said I was lucky to be alive. It is very dangerous for your level to get to low or to high so you might want to check yours if you haven’t already.
    This week I have been putting 10-15 drops of peppermint essential oil on the bottom of
    one of my feet and I swear my diarrhea is so much better and my stomach feels so much
    calmer. Good Luck!

  11. After 9 months of chronic watery diarrhea – 10-15 times a day with weight gain I was finally diagnosed with collagenous colitis. I also have hypothyroid, lymphedema and recently treated for breast cancer. I have read on several sites that this is actually an autoimmune disorder. I am trying to figure out how to manage this besides the 8 pepto bismol tablets my doctor ordered. She said to add more fiber – but the common thread among those with the disease indicates gluten and possibly lactose free. My stomach is so swollen with the inflammation – I am a size 10 everywhere but my tummy – that area is a size 16! Any suggestions about how to start changing the way I eat and cook are very welcome. There is so much conflicting information on the internet I do not know where to begin.
    Thanks to all

  12. In February 2015 I was diagnosed with Collagenous Colitis, after an endoscopy and colonoscopy biopsy. I am a 55 year old very active woman with psoriatic arthritis too, which is under control with Humira. Everything else health wise is great. For 3 months I have had watery diarrhea with some pain, mainly in the early morning to about 10 or 11 am. I talked with my gastro endocrinologist and decided to manage try to manage the colitis with diet first. He and my rheumatologist both agreed separately, and suggested that I start with going “Gluten” free, because gluten can cause inflammation in some people. Believe me, I was one of those people that would laugh at people going gluten free that weren’t intolerant of gluten like those with celiac disease. This was a process, finding what had gluten in it and what does not. The dr.s suggested that I tray for a month or two. During the first 2 months there was no difference, and I almost gave up. But I decided to keep trying the gluten free diet and over this past month (month 3 and 4) my bowel movements gradually have become soft, to semi soft, to normal. I am a believer now…no gluten for me!!! Just remember it affects everyone differently and could take some time for the inflammation to dissipate.
    All the best to my fellow colitis friend,
    Cris

  13. Katie was the first person I had heard say they felt foggy headed and dizzy. After my diagnosis of college and is colitis, I G.I. doctor put me on budesonide 9 mg a day. My diarrhea has been completely gone. Gradually I came down to 1 mg a day. However I cannot skip days without symptoms. My first and disabling symptoms are the foggy head and nausea. Usually extra budesonide helps. But now I am four days without relief. I have four or five stools today but no diarrhea. My G.I. doctor doesn’t think diet matters with this type of colitis. I think it’s stress that brings it on but I’m not sure. Also I appreciated the comment about dehydration even though I try to drink a lot of water. Is anyone have a comment about the association with NSAIDs or smoking?

  14. Also wondering if anyone has been diagnosed with osteopenia. I did not have a dexa scan prior to starting the budesomide but I am wondering if there is enough steroid absorbed to weaken my bones.

  15. I am 21 years old, was diagnosed with microscopic colitis after having nausea, diarrhea and pain after 4 months and loss alot of weight. I am now going through different medications but my doctor keep changing and tappering doesage which messes with my stomach at time. Still get pain and bloating along with diharrea everyday still but notice it has decreased in the symptoms since being on the medications. I have noticed that I have been very spacey and unmotivated lately. Feeling down alot (depressions a worry Iv been having) and its really starting to wear me down. Iv lost 50 lbs almost and its almost been a year of trying to figure it all out 🙁 my daily life is just not as it use to be.

  16. Hi, My son was diagnosed with collagenous colitis at 12 years of age. Very little is known about this Condition . We have put him on a gluten and lactose free diet diet with excellent results. He is symptom free and on glutathione and probiotics daily. Muon fortunate.y he struggles to gain weight which is difficult for him but he attends school and has a healthy life. We have had a lot of pressures from his peadiatriticiani to give him a Ng tube but we are not comfortable with this diagnosis as he has no problem eating normally. But as he is in his formative years it is a concern.

  17. I had diarreha for 2 months. My doctor had me try probiotics, but to no avail. I did stool samples that were negative and finally had a colonoscopy. The diagnosis was microscopic collitus. My wonderful GI doctor put me on the miracle drug Budesonide 3 times a day, then 2 and finally 1. I finally went off it and have been symptom free. The drug is expensive, but well worth every penny, I am sooooooo happy,.

  18. What works for headaches? Don’t know what I can take having microscopic colitis.

  19. I went for about 6-7 years with cronic diarrhea. It would come and go. Then it lasted for 2 weeks. I lost 20lbs. Finally went to the doctors. He asked why I waited so long. It took 2 colonoscopys and an endoscopy to get a diagnosis. I have microscopic colitis. I hated going anywhere. I searched for the bathroom wherever we went. I was afraid to eat. This is a humiliating and embarrassing diease. My GI DR. finally prescribed welchol. What a life saver! Life is back to normal. It took me awhile to depend on this medication. I wanted to make sure it worked! I still have flair ups. Usually when I’m stressed out. Or just eating really bad! I haven’t changed my diet much. Just cut out alot of fried foods and fat. That seems to be my trigger. I have read the postings here and it seems alot of people are taking budesonide. Ask your DR. about welchol. Hope this helps!

  20. I have had MC for 12 years. The only drug that had much effect at all is Entocort (Budesonide). Unfortunately, I have developed an intolerance to most steroids, side effects worse than the condition being treated. I developed an allergy to Sulfsalazine, very bad widespread rash, skin peeled off. Imodium has zero effect. I now take Asacol and Lomotil. Life is manageable on these, but not great. I just got Colestipol a couple days ago, zero change. This is the most frustrating condition!!

  21. I was diagnosed with Microscopic colitis 2 years ago and have frequent flareups ,now my only prescription (Entocort) is running out along with the samples my doctor freely gave me at first. He sent another script for me a month ago because that’s the only med that helps, its like a miracle drug, I have to use it sparingly now because when I went to pick it up , it was so expensive that I cannot afford it ….. I’ve been in touch with the manufacturer and researched other options ….it is a drug that is not on a list to assist those who need help with the cost…..don’t know what I can do now …I wonder if the cost will ever come down! Before my insurance kicked in ,,it was $1,550.00 and the cost for me is $457.00…….

  22. Bonnie, I completely understand where ur coming from. Im 40 and this has got to be the worst problem I have EVER experienced in MY LIFE as far as my health is concerned!!!… I went through the same exact problem w Ins. As u and actually thought I was gonna die. I finally found a Dr. Who cared n would help me find a pharmacy that I could afford. Ask ur Dr. To go through Canada Pharmacy… The whole 3 months worth only cost me 250$ It takes about 2 wks to get and ur Dr. Has to send a script to them but the small hassle is WELL worth the cost…. Hope this helps… Have a blessed n poop free holiday;)

  23. Hello all, I have had Collagenous Microscopic colitis for all of my life. It had gotten much worse in the past three years and I finally got a diagnosis a few months ago. I had been through numerous doctors and naturepaths since childhood looking for relief. After diagnosis, I was prescribed Entocort (Budesonide) When I went to fill the prescription it was $900 for 90 pills WITH my insurance paying for part of it. I couldn’t afford that, so my Dr. recommended a compounding pharmacy and they were able to make it for me. It was $100 for the same 90 pills. The only difference was they didn’t use enteric coated capsules. It wasn’t a problem, I took the pill with food (as the compounding pharmacist recommended) and worked it perfectly! I took it for 90 days reducing the dose each month. It was absolutely amazing while I was on it – weird to be a normal person!! I am struggling now a few weeks after being off it, but I hate to be on a steroid consistently- they have their own side effects. I have found quite a bit of success with a gluten free, dairy free, and grain free diet, but still not perfect! If you are looking to try that type of diet I highly recommend Danielle Walker’s book “Against All Grain.” It has made a diet that was completely overwhelming at first very easy and delicious. Hope this helps someone!

  24. Hello. I have had intestinal issues all my life. One of my earliest memories is having gastritis at 4 years old. Ileitis at 19,etc. I have had many diagnoses over the years and finally came to “Inflammatory Bowel Disease, Microscopic, Lymphocytic Type”. I finally have an answer which has been proven by lab results. I am relieved to not think I am a crazy person anymore. My doctor jokes that my family can’t deny that I am sick anymore. I try not to talk to any of them about any of the immune system problems anymore.

  25. I’m 56 years old had my first colonoscopy a month ago and was diagnosed with MC. Recently started having flare-ups with nausea and some vomiting is anybody ever had that I’m new to this disease so any tips or suggestions or any advice is welcome. My dr. Has me on Pentasa has anybody ever had that before.

  26. I was diagnosed with microscopic colitis 3 years ago and what works for me is a combination of probiotics and activated charcoal capsules.

    I tried different medications, but only the steroids worked to control my symptoms and I didn’t want to stay on those long-term. When I went off steroids I got the added bonus (kidding) of large-plaque psoriasis on the palms of my hands. My dermatologist says that’s a common side effect of stopping oral steroids. To those considering steroids, note that I haven’t taken steroids them in years, but I still have the psoriasis. I’m not saying don’t take them, but be aware that they can come with a lot of side effects – loss of bone density, thinning skin, low blood pressure (a worry for me because mine is already very low), to name a few.

    I tried other things – Boswellia, papaya enzyme, pepto, ginger tea, I can’t even remember all of them.

    Now my symptoms are controlled with a combination of probiotics (I take one Garden of Life, Dr. Formulated Probiotics Once Daily Ultra Capsule for colon & immune health) and one activated charcoal capsule daily. I ran out of the probiotic recently and had a flare-up within a few days. Note that it has to stay refrigerated and if you order it to be delivered make sure that they cold pack it. It’s not cheap. I try to find it on sale and usually pay about $40 for 30 capsules. It has been a lifesaver for me though.

  27. I have had MC since I was 30 years. Now, I’m 47. I have found eliminating dairy, grains, and eggs has helped me. I encourage everyone to try eating, only healthy fats, meat, berries, and vegetables for one month. Take floramyces and digestive enzymes. I also take vitamins D and B. I pray and read the Psalms too. It helps greatly!

  28. On April 1, 2016 I presented with cramping, urgent, explosive diarrhea on awaking. Thought it was food poisoning from the restaurant I had eaten the night before. Sadly, no. After 8 days of this, I made an appt. w/a GI dr. 5 days later a colonoscopy & diagnosis of Microscopic Lymphocytic Colitis & prescribed Budesonide EC 3 mg caps 3 X a day. Tried restrictive diet, probiotics & other supplements first because I was recently diagnosed with osteoporosis in Jan., 2016 & did not want to take a steroid with the bone issue. Nothing was helping so on June 3, 16, I decided to take the steroid and a * fiber tablet if I will be in the public at any length of time. Both seem to be working until today – ate Bran cereal for breakfast & have been cooped up all day with 5 BMs so far. Will not eat bran cereal again!!!
    *Fiber tablets (drink plenty of water) helps with a firmer BM. Two makes me constipated.
    Has anyone had any success with supplements in healing the colon?
    i am 68 & never had a known issue with my colon.

  29. Hi everyone, it’s really interesting to hear about all of your symptoms and how you’re managing them. I was diagnosed with unspecified microscopic colitis about a year ago, I took budesonide 9mg for a while and that really helped. Then I started slimming world and found I was having no problems at all. Recently I have been naughty and had some food which I wouldn’t normally eat and have also been under a lot of stress, and I’m now having a flare up. The difference this time is my whole body is aching and I am so tired. The diarrhea isn’t as bad but my stomach is huge and so painful. I’m wondering if anyone else feels like they have the flu during a flare up and also whether anyone else has unspecified microscopic colitis?
    Thank you in advance
    Yvette

  30. All of the comments and advice are really helpful, if for no other reason than to know I’m not alone or a hypochondriac or just weird. Thank you! I have been on the Low FODMAP diet for a year and although it is difficult to adhere to when not at home, it has proven to prevent most symptoms. I need to find a medication that is effective and affordable. So far only steroids have really helped, but obviously are for short term success. Although I have taken and found success with Butesonide, I cannot afford even my copay for it. It is hard to believe that this drug is the only effective treatment, yet is unaffordable. My sympathies to those patients who have life threatening illnesses who cannot afford medication. It is a cruel joke. If one pharmaceutical company can manufacture a drug then competitors should be able to as well. So it is no surprise that the pharmaceutical company that produces Endocort wishes to maintain ownership and control of a drug that is exclusive and in such demand.

  31. I was diagnosed with MC the beginning of July after a Colonoscopy. I had been sick (diarrhea, vomiting, nausea since January and had lost 30 pounds. Went on Budesonide for 2 months with terrible side effects (headaches, sore throat, rotting stomach). Now after weaning off Budesonide my MC is back after only 8 days.

    What a waste of time.

  32. I have MC and celiac disease. Was diagnosed years ago. Have been dealing with a horrendous series of flares. Did two rounds of Uceris which worked great, but as soon as I went off the symptoms came back. Going to the bathroom 20 or more times a day. Just started on Dezicol yesterday because I can’t do any more steroids. If this doesn’t work I will be forced to go on Imuran which scares me.

  33. @Sick of being sick,

    I know how you feel. I went out to eat on 8/7/16 at the Prudential Center with my boyfriend for dinner and when we went back home I woke up at 4am with horrible diarrhea and sever abdominal pain. I literally was on the toilet for 8+ hours. Eventually I went to the hospital where after 4 hours of nothing they advised it was probably a virus and to go home. (Nice $1,500+ visit). After that day I hadn’t been the same. I’ve always had IBS and would have episodes 4 to 8x a month but nothing like this. I was crapping my colon out in horrible pain for days. Eventually I got a colonoscopy done and they said I had MC then gave me meds and the pain along with 20+ bathroom visits a day went away. As soon as my meds ran out and I waited two days to get a refill the 24/7 pain and watery diarrhea 20+x a day came back even with a new medication I was provided. I feel like hell, can’t go out in public (hard enough to go grocery shopping) and have been cooped up at my employers restroom for the last week. It sickens me this condition isn’t taken into account more. I was crying telling my GI doctor I’m so tired of not sleeping, crapping my brains out and being in constant pain and he basically said medication is trial and error and plenty of people are sick and just get along with their lives. That’s peachy, sorry if it’s hard to manage feeling like I am going to shit myself every time I wake up, drive to work, help a client, drive to get food, go home and try to sleep. God I hope this goes away. So far the last two days I have tried to eat nearly nothing. Only a piece of fish here and a piece of fruit there. It has helped bring my bathroom visits down a little bit from roughly 20+ to 15+. I hope we can all find a sure way to kick this awful condition.

  34. I was diagnosed with Microscopic Colitis (Lymphotic) this summer. I’m 46 and in otherwise great health. Had my gallbladder out years ago due to gallstones, but I was not your typical patient (I was thin and young). The last few years I noticed I had loose stools and bloating, and then I started to feel dizzy sometimes. I had a colonoscopy and endoscopy this summer, and in addition to MC, they found polyps and an irritated stomach. I’m on budesonide, and I totally feel for everyone trying to pay for this medication. I will try a gluten and dairy free diet Jan. 1 because so many people have reported improvement with that. I might add in a low FODMAP diet too. Anyway, please post if a certain diet has helped you so we can all try it. Wishing everyone good health!

  35. I meant to add that I sometimes get jarring pain on the surface of my skin, as though my immune system is attacking it. It is so strange. It’s startling. Doesn’t happen all the time but when it does, it’s usually on the surface of my abdomen. Adding this to my symptoms in case anyone else has had this strange thing as well.

  36. My lymphocytic MC was probably caused by too high a dose of levothyroxine (synthroid). You must eat a healthy diet – lowfat, very low sugar, no artificial sweeteners, with fruit and vegetables- however, salads might be hard on your system – so eat cooked vegs. I only eat poultry or fish, no dairy, eggs are okay (hard boiled); drink water (not chlorinated), Take a good multivitamin with minerals, 5000 units of vitamin D, vitamin C, and B 12; I take Garden of Life 85 billion probiotics formula for Women over 50 and Wiser – and 1/2 of an immodium EVERY DAY after breakfast (at 10:30 or (11:00 am). Get a fitbit to track your steps and walk 8000 to 11000 steps per day (not all at once & walk around the house if the weather is nasty)

  37. Hey everyone – all your comments have been so helpful – I’m just kind of nervous about all of this – I was diagnosed with microscopic colitis about 6 months ago after having a colonoscopy because of ongoing d and headaches from dehydration- I too was prescribed the budesonide – but didn’t get it filled – I was on prednisone about 20 years ago for 3 years because of an autoimmune disease and didn’t want to go down that road again – nothing seems to help – the amount of pepto that I have to take to make any kind of difference makes my tongue black So – that doesn’t work – and I’ve tried everything else – to no avail – doesn’t matter what I eat – if I drink fiber or not – I’ve lost almost 58 pounds this year – I’ve talked to other people who have this and they said they haven’t lost the weight that I have – have any of you???? And if so – did it level out at some point? Thanks for any advice !!

  38. I have been suffering with diarrhea for over 7 months part of which was caused by C-Diff. when that was gone but not the symptos I had the colonoscopy done and was diagnosed with MC. They put me on lialda (mesalamine) which made it worse and I almost ended up in the hospital for dehydration. Since the I am trying slippery elm bark powder and Carab powder mixed in applesauce. If I eat that 3 times a day I can usually keep it under control but sometimes that does not help either. And yes Meredith I have lost 23 lbs so far because of this. It seems the Dr. just doesn’t care or doesn’t know what to do. This is very frustrating but thanks for letting me rant for a bit

  39. Meredith you can take the Pepto tablets (not chewables) with probiotics and you will not get a black tongue. I am currently doing this with doctors orders. I take 85 billion per day probiotics and 8 Pepto tabs. I also take 1/2 of an immodium tab after breakfast. I typically have 3 diarrhea bm’s in the morning. I eat small healthy meals – no fast food. I was diagnosed with lymphocytic MC.

  40. I am 70 and it started suddenly, no warning, embarrassing, colonoscopy, Imodium and then I was prescribed budesonide which solved my problem after a week but also no caffeine, sweetener, white bread, chicken or fish, low fat milk, low fat yoghurt, fruit with no skin, veg from the ground with no skin etc, boring but it’s working

  41. I am 63 years old. I was diagnosed July 2016 with MC. I am so grateful for your helpful comments. I have been on and off the budesonide. As soon as I come off it my symptoms start back. The nausea is just as bad as the diarrhea. Is there anyone else with bad nausea?

  42. I was diagnosed with MC about 5 years ago. The dr. gave me nothing for it. Saw another gastroentologist and he did not prescribe anything either. Finally, my sis in law told me her dr. told her to take 8 pepto tabs a day. That worked for me. But it keeps flaring up, after a period of no problem. It does not seem to matter what I eat. In fact, white bread is less harmful to me than wheat. I do not like the reports of the Entocort–tii expensive and I do not like steroids. But no dr. ever told me about it. Mine starts early in the am and then clears up before noon. I schedule nothing before noon. Luckily, I am retired and 79.
    It flares up most when I travel, which makes me wonder if it is affected by water change, or the stress of travel. I will try Metamucil to try to firm up the stools. I don’t have nausea, but lots of gas and bloating.

  43. I had a colonoscopy in march and was diagnosed with lymphocytic colitis. I have been on budesonide which seemed to help but this week I have had 3 BM. And the 3rd was very loose and soft. Prior to this week I only would have 1 or 2 be which were formed. I also don’t know what foods to avoid. I have eliminated cheese, salads , grains, fruits such as strawberries. Only have 1 coffee a day and a banana. Any suggestions on what foods to eat to create firmer bum movements?

  44. Hi my name is Brian I have MC I just recently picked up a book it’s called self healing colitis & crohns by David Klein it’s very informational I’ve been suffering with MC for a year and a half now it’s horrible I wish the best of luck to everybody and God bless

  45. Nov.2013, (age 60) sudden onset of frequent diarrhea stools. No history of bowel problems. Got dehydrated, had colonoscopy & diagnosed with microscopic colitis. Budesonide worked well, then MD put me on Asacol to help things along. Had “acute drug intolerance reaction” which is different than an allergic reaction. Life-threatening, but it put me in remission for 9 mos. Then the colitis returned. Have been on 3mg daily maintenance for the past 3yrs, with efforts to wean off. Pepto-Bismol supplement as needed. No success to wean completely off. Now am having a “flare” despite having been on my maintenance dose. Had eaten some old, old strawberries, & then after 3 days foul diarrhea 1X/day, then the diarrhea just stayed over 3X/day. Increased Budesonide to 9mg, still some abdominal discomfort, but stools have firmed. Can’t decrease dosage yet because diarrhea returned. (Oh, and I had had long-term use of NSAIDs for years after an auto-accident. I believe this set the bowel problem up, though my GI says no. The literature notes it. I also have hypothyroidism, which is an autoimmune disease, and folks who have one AI disease, often have others.

    Does it take a few weeks to get back to a baseline when a flare occurs? I usually was able to go quickly down on dose, but not this time.
    Thank you.

  46. After a year of misery, I was diagnosed with lymphocytic colitis. So it has been a year now, trying diet changes and meds. I have found that all dairy is bad for me… because of the lactose and casein. I am not sure about gluten. I cannot eat most fruits and no vegetables. Does anyone have these limitations on veggies… miss my salads! The common denominator for many of us seems to be budesonide It really works well for me but whenever I wean myself off it, the diarrhea returns. 6 mg a day is my ideal dosage along with 2 Imodium pills. My doctor does not want me to take it long term, but it’s the only thing that works for me. Has anyone been on budesonide for a long period of time… like several years? Also, you can buy it much cheaper in Canada thru a mail pharmacy. Just be sure you use a pharmacy approved by the Canadian government.

  47. I was diagnosed with lymphocytic colitis 13 months ago. I try to manage this condition but more often than not, it manages me… I go between the spectrum of asacol (2 x 400mg daily) mitil for nausea (up to 3x daily) immodium 1x daily, if I go to the bathroom 3x in short succession , and buscopan for cramps and pain. I have not had a normal bowel movement in all this time. I have lost 10lbs in the last year. I can still cope with all the indignities of this condition because I work from home, so my bathroom is close at hand. However, I cannot deal with the interminable nausea and the overwhelming tiredness that accompanies a flare. I have changed my diet totally according to “gut instinct”; I no longer eat any dairy products; I avoid eccessive fat; I believe that gluten is not a problem for me, however i am mindful of what I consume during the day – night time when i am relaxed means i tolerate more. I no longer eat salads or fruit; I eat very few raw veggies; I tend to eat more bland foods especially during the day. I truly rely on “gut instinct” as I believe nobody can tell you better than your own body as to what it wants at a certain time. I tend to have a lot of salty things and eggs are not a problem for me; having said this, the frustrating thing about this condition is that one can eat something on the one day and if one eats it the next day, it could cause a flare. All I have mentioned is due to trial and error: we are all different so there is no blueprint with regard to this condition. I thank you all for what you have written because nobody understands this condition unless they have experienced it

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