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Lymphocytic Colitis and Microscopic Colitis Club

Thanks, David. It's great to have the support of the people here who know what I'm going through. My hubby is great, but really can't understand even though he tried. The rest of the family pretty much says eat better and it's all in my head. The only people who really understands is my sister who has crohn's, and to some extent my brother who is waiting on a kidney transplant due to an autoimmune disease. Man, our immune systems are horrible!
 
Beach, here is a study that showcases a greatly increased chance of having MC is you have Celiac and of course vice versa.
Thanks David. I wouldn't be surprised if there was a connection between MC and celiac. Overall at this point believe it is best for most of us to avoid wheat. Too many diseases are associated with its consumption. I'm of the belief these days that if one has a bowel condition, or an autoimmune disease, best to avoid wheat and probably others grains too. They are not worth eating. And while I'm not cured eating this way, I feel much healthier doing so.

When I was diagnosed as a celiac, even though all tests came back negative, I already had a poor opinion of hospitals and doctors. This diagnosis didn't help matters. I recall after having another upper GI test where a biopsy is taken to test for celiac, the doctor came into the recovery room. He mentioned to me that the latest test results had not come back, but he was certain that I was a celiac. I needed to avoid wheat he stressed. He then offered me a wheat blueberry muffin to snack on. I was groggy from the medication, and wouldn't believe it latter other wise, but my father was in the room as a witness. My doctor did a poor job of selling his idea that I should avoid wheat to say the least.

This all happened in the dark ages, before the internet. What would have helped me at the time was having information to reference about avoiding wheat. I doubted my doctor's belief that I was a celiac and for good reason, but if I had internet places to read, see how others did with different ideas, I might have saved my self years of grief.

Oh, the midnight bathroom run. Those were never fun. I would be in a sweat also. I used to suffer from that. I associated the sweats with a rapid heart rate that I would develop, as if I had been exercising. It was always a bit odd in that during the day I would become cold and chilled easily, but at night could be hot and sweaty.

That is one thing I've noticed of late on my current cow avoidance diet. The rapid heart rate has gone away. It's too early to make much of anything from it, but have found it curious. Figure that might be why I'm more energetic of late. I still sweat some though, but that is because the weather is turning hot now!
 
Beach, that's me with being cold during the day and hot and sweaty at night. Hubby and I have one major disagreement......what to set the heat/ac at! He's always hot and wants it set to be colder than it is. We can agree at night, but if it's not summer I walk around our house in sweats if I'm not leaving the house! During the winter I spend a lot of time with my slanket! Somehow I tend to not get hot during the day at all. At one point we lived in southwest Texas, and during the summer it was normal to be over 100F most days. I don't think I ever wore shorts! I was totally comfortable in jeans and shirt. Everyone thought I was nuts! At night though I would burn up.
 
Beach, that's me with being cold during the day and hot and sweaty at night. Hubby and I have one major disagreement......what to set the heat/ac at! He's always hot and wants it set to be colder than it is. We can agree at night, but if it's not summer I walk around our house in sweats if I'm not leaving the house! During the winter I spend a lot of time with my slanket! Somehow I tend to not get hot during the day at all. At one point we lived in southwest Texas, and during the summer it was normal to be over 100F most days. I don't think I ever wore shorts! I was totally comfortable in jeans and shirt. Everyone thought I was nuts! At night though I would burn up.
I'm chuckling about this. A little bit ago I returned home and found the natural gas fire place had accidentally been turned on. I live in south Florida where temps have been in the middle 80s of late. I keep my house at 80F, and that feels just right to me! Most others complain that I keep the place to warm though. They would prefer to see the place kept in the lower 70s. I have my folks stopping by for a visit in a hour. If they had seen the fire place turned on, and as hot as it is today, I'm sure they would have thought I'd gone off the deep end! :biggrin:

I don't know what it is about this gut condition, but I'm just like you, chilled at day and warm at night. I've always been that way too. When i was growing up in California I can recall summer temps reaching well above 100F. Of my little group of play pals I was the only one happy to run around in the golden hills on the hottest days. The warmer it was, the happier I felt.
 
Climbergirl: I have had that feeling like my brain was shaking. I'm in the same city, most likely at the same U., if you need support.

I was diagnosed 3/16/2012 with MC (collagenous). Before becoming ill in December 2011 I was very active with outdoor sports as well. Even though I am a woman, I don't like hearing its an old woman's disease either. I have started Entocort 9 mgs a day and am having my food sensitivities tested by EnteroLab. Eating gluten free and dairy free helped eliminate the D put I still have a lot of bloating and pain in my left side and lower abdomen. I started relying on ibuprohen when I occassionally experienced rectal spasms about 5 years ago. Of course I am no longer taking that. I also started having night stools and have found out that is common in MC. Some people think its because of food sensitivities. My Dr. at the U is great and attentive but doesn't think that diet is involved. We're hoping that 3-4 weeks of the steroid will create a reversal and send me into remission. Then I should be able to reintroduce gluten, then dairy. I have also stopped drinking caffeine and alcohol. After 4 days of Entocort I am experiencing acid reflux, hoarseness, tightness in my chest and sleeplessness at night even though I am still fatigued. What kind of side effects are other Entocort users experiencing? I don't want to take it for any longer than necessary either. I was so thankful that the D stopped. Now I want to pain to stop. I hope to be able to resume eating gluten and dairy again. I have found useful information at Celiac.com and Microscopic Colitis Suppot as well as here. And google+!
 
New LC member

Hello! I was just diagnosed with LC this week and started on Entocort yesterday. Wow is that stuff expensive! I have a high deductible health plan so have to pay out of pocket until I meet my deductible so what a shock!:ywow:

Anyway, had symptoms for many, many months before seeking help. Terrible diarrhea, very embarrassing and was always afraid I wouldn't be able to get to a toilet fast enough in public. Commuting to work a nightmare. Pepto did not help, Immodium helped somewhat, but still very nervous all the time.

In a way I'm grateful to finally have the diagnosis and hopeful that the treatment will work. I am 41 years old and never had any trouble with digestive issues before last year.

In addition to the Entocort, also started taking probiotics and fiber supplements (Metamucil) yesterday.
 

David

Co-Founder
Staff member
Hi MNGal and welcome to the club :) I understand the feeling of being glad to finally have a diagnosis! And yes, Entocort is wicked expensive. I have a high deductible plan as well ($7,000) so there's no way that's happening for me. I think I probably would have tried it at this point if it wasn't for the deductible.

Please keep us updated as to how you're doing. We're here for you anytime.
 
In week four of 9 mgs. of budesonide. Still having side effects that were immediate and now have extreme abdominal pain. Anyone else? I've read that achieving remission is best achieved by adhering to 9 mgs. in the a.m. I am losing work and sleep with the pain. It hurts to sit up and to bend over. Are others experiencing this and able to work during this treatment? I anticipate 8 more weeks of this.
 

David

Co-Founder
Staff member
Has the abdominal pain gotten worse since being on the budesonide? One should never be in "extreme" pain. Either they need to further evaluate you to see what's going on, add other medication, provide pain medication, or some combination thereof.
 
The pain has gotten worse. They've prescribed hyoscyamine (antispasmodic) for the pain but it isn't very effective and has side effects as well (dry mouth and eyes, rapid heart beat, fatigue). A couple of hours after taking it I am able to eat something but the relief doesn't last for more than an hour. I also have heartburn from the budesonide that I didn't experience before. The GI clinic has checked everything else out with blood work and stool work, endoscopy and colonoscopy. The mobility pain has been there since I first had symptoms of MC but the BMs normal now since taking 3 pepto bismol 3 x a day for the past week which they prescribed because budesonide wasn't completely helping with frequency or leakage. The abdominal pain, bloating and heartburn increases throughout the day after taking the budesonide.
 

David

Co-Founder
Staff member
I assume you've told your doctor how you're doing on the Budesonide? If so, what did they say? It seems to me like you shouldn't be getting worse and maybe trying some other treatment option would be your best bet.
 
Yes. They want me to continue taking the budesonide because the symptoms continue and I needed to add pepto bismol for additional therapy. Now I have tinnitus though so I may not continue with the next 2 - 3 weeks of pepto bismol. I do feel like I am getting worse instead of better and I am being very careful with my diet, eating gluten free, dairy free and soy free as well as low fiber, no caffeine.
 

David

Co-Founder
Staff member
Something doesn't feel right to me. Of course, I'm no doctor. If you're not comfortable with the situation, always feel free to get a second opinion from another doctor.
 
Thanks David. I got a call from my main GI Dr. today. He was unaware that Bismuth Subsalicylate could cause tinnitus. He is going to look into it now. I stopped using it. Day 3 of ringing and it's gotten worse.

I'm going to keep taking the 9 mgs. of budesonide in the morning. He isn't aware of anyone having abdominal pain from MC. He said we couldn't tell if the pain is a side effect until I go off the budesonide. I need to take it for at least 4 more weeks. He said we can't keep changing the medication or we won't be able to see what is working before that time frame.

He thinks I may have IBS as well as MC, possibly the result of a viral infection (one of my early bouts with diarrhea where my husband was ill too). He is prescribing an anti-depressant for that. I am assuming it will be a tricyclic type. He did say that it will take awhile to go into effect though. It is supposed to help with the pain as well as sleeping at night and slowing down the BM mobility.
 

David

Co-Founder
Staff member
Whew, I'm pleased to find out that this abdominal pain I've been having all along isn't due to Microscopic Colitis.

/sarcasm
 

David

Co-Founder
Staff member
I'm also going to have to contact every site that discusses MC such as the Mayo Clinic and tell them to remove "abdominal pain" from their symptoms page.

In short, I'd suggest you get a second opinion because your doctor... well... yeah.
 
LC/Budesonide

Hi
I was diagnosed with LC in September 2010 and have now been taking budesonide for 22 months. For 1.5 years I was on 9mg per day but have now redunced to 3mg every other day as I have become more stable. The main side effects have been, moon face, bloating, weight gain and tiredness - I have gained 56ilbs / 4 stone since starting on the steroids. Has anybody else had this side effect and if so how do you get rid of it? I have now lost a lot of confidence!!:sign0085:
 
I really dont think most doctors have a clue about diagnosing this condition...It seems they throw the text book meds at you, then later when you tell them it didnt work they just give you the deer in the headlights stare.

I didnt have those side effects with budesonide, and they had me on if for quite a while. ( diagnosed with LC over three years ago, pain and symptom free since Feb 2012)

I will say that the abdominal pain was intermittent with me. It didn't seem to have any ties to what I ate, drank, or took. Even when I was medicine free for months on end (tired of taking and buying what wasn't working) the pain would come and go.

In my case, once I found a treatment that worked for me, I began to notice and improvement fairly quickly. It didnt take months of hoping ( and suffering)
 
I am having a abdominal and pelvic CT scan to rule out other possibilities. I still have tinnitus from the pepto bismol that I took for 1 week. I stopped taking it for two days and talked to my GI. He then prescribed nortriptyline 25 mgs. at bedtime for the pain. I tried it once and it was easy to decide that it is not for me. He also recommended that I take (1) pepto bismol 3 x a day and continue the 9 mgs. of budesonide and hyoscyamine, as needed, also for the pain.

I wasn't able to tolerate the (1) pepto bismol 3 x a day either. I have been gluten, dairy and soy free for almost 7 weeks. I've been taking the budesonide for 5 weeks. I have also avoided the other food reported in my Enterolab testing. Because the pepto bismol trial is over, I have started the liquid imodium as prescribed by my GI.

Today, my partner's boss (who has Celiac) told him I should eat only fruit and boiled chicken for 6 weeks and then reintroduce anything but wheat, rye, barley and oats. I do not tolerate drugs well and am doing the best I can on my restricted diet. I've gained 10 lbs. which I'd like to attribute to the steroid consumption.
 
I saw my doctor today for the first time since my colonoscopy. I had seen his physicians assistant before. Now I'm more confused than before! The PA had told me I have microscopic colitis, the dr says no, it's not showing as either type of microscopic colitis, the biopsy says colitis. Apparently the PA was going on the fact that there weren't any visible ulcers and it led her to her conclusion of microscopic colitis. Seems I'm not sure where I belong on the forum now!
 
Youngest ever?!

Hello there fellow LCer's!
This is kindof a new thing for me, as I've just been diagnosed last month with Lymphocytic Colitis! I had horrible symptoms for about 7 months when my doctor finally sent me to an organ specialist. There I got my first ever colonoscopy and found nothing (bummer for going through it!).
The last week in April, I went to see my specialist and the news that I had microscopic colitis was given to me. To say I was shocked was a bit of an understatement, because I didn't even know this could've been what my symptoms were. Now of course, it all makes sense!
For right now, my doctor is on a trial and error route. I had to drink this chalky tasting stuff (anyone else?) and now I'm taking asacol, with no success.
I'm only 19, which surprised my doctor when she gave me the diagnosis! I was kind of scared at first, not being educated on it, but I'm getting involved instead of scared. Is anyone else participating in a Gutsy Walk for the Chron's and Colitis Foundation? I'm not sure if its just in Canada!
Did anyone also feel kind of isolated with the diagnosis?
Thanks for letting me spill my guts!(Haha)
Hope it hear from ya'll!
 

David

Co-Founder
Staff member
Hi there Laur! I'm glad you found us. I DEFINITELY felt isolated when I was diagnosed. Based upon what all the literature and my doctor said, I thought I was going to have to go to a retirement community to find others with LC. Of course, as is all too obvious now, the literature needs to be updated because most of us aren't old women.

I was never given chalky stuff, I'm curious what it is?

What are your symptoms?

Again, welcome!
 
Thank you for the warm welcome! Ok good I'm glad its not just me! Um the name of the drink is Questran? I think. Its horrible and I hope no one else has to drink it!

My symptoms were most of the same as I've read on here. Horrible, constant diarrhea, jabbing stomach pains, and a bit of weight loss. Also I've had a few....accidents which finally made my Momma realize this was something I couldn't control on my own. I also became afraid to eat anything. I know that's more psychological, but it still worries me to this day. What foods will make this worse, if I'm out in public and eat, will it happen. Things like that.

My stomach pains got worse while I was on the Questran, and they still aren't much better with the Asacol.

My family is more scared then they like to let on, and my Dad just realized that its a disease, not just something that will go away. I just wish they'd open up more and talk to me.
Again, Thanks for the warm welcome! I'm so glad I joined!
 

David

Co-Founder
Staff member
Technically, it's possible for Lymphocytic Colitis to go away. It does for some people, it depends on the cause.

And yes, Questran is utilized by quite a few here to reduce frequency of diarrhea. Be sure not to take other medications anywhere close to taking it as it will interfere with them.
 

David

Co-Founder
Staff member
I'm curious how many of you know what your vitamin D levels are. I was just reading about how vitamin D acts directly on T lymphocytes to inhibit proliferation (source). And of course, we all have too many lymphocytes. I know if I don't spend much time in the yard, I start to feel worse.
 
Hi David,
Had my Vitamin D and B12 levels checked and in my case they were slightly elevated, and I live in Maine. I do take a multi-vitamin pack every day and my doctor suggested that I cut the Vit d in half. We were searching for reasons for my being fatigued all of the time.
 
Hey Raemckee (and everyone else),

Sorry I've been so MIA...didn't see this post! Wow, you are the first person I've heard who has had the brain shaking thing! I actually started developing some really weird vision symptoms too (blurry vision, double vision, etc) which were starting to be way impairing! We should totally compare U docs though....would be interested to hear more about your experience. And I agree with David (always a great reference!), cramping is totally related to LC. Also, entocort did not help me (just as an aside). No terrible side effects (just fatigue) but not helpful.

I actually went to the Mayo clinic last week because I've been having such weird symptoms. I've tried a couple diets (gluten, dairy, soy free etc) and didn't get much help from them. They couldn't find an answer to my vision/head symptoms but the GI doc there put me on prednisone. And I know it gets a bad rap but so far it's been the most helpful thing I've tried. GI symptoms are so much better and the brain shaking is about 50% better (granted it's only been about a week so we'll see). I'm also on a calcium/vitamin D supplement which I think may be helping a bit (I know my vitamin D levels were like 25). Ok, I'm way tired so that's all I have now...sorry if I'm rambling! :)

Climbergirl: I have had that feeling like my brain was shaking. I'm in the same city, most likely at the same U., if you need support.

I was diagnosed 3/16/2012 with MC (collagenous). Before becoming ill in December 2011 I was very active with outdoor sports as well. Even though I am a woman, I don't like hearing its an old woman's disease either. I have started Entocort 9 mgs a day and am having my food sensitivities tested by EnteroLab. Eating gluten free and dairy free helped eliminate the D put I still have a lot of bloating and pain in my left side and lower abdomen. I started relying on ibuprohen when I occassionally experienced rectal spasms about 5 years ago. Of course I am no longer taking that. I also started having night stools and have found out that is common in MC. Some people think its because of food sensitivities. My Dr. at the U is great and attentive but doesn't think that diet is involved. We're hoping that 3-4 weeks of the steroid will create a reversal and send me into remission. Then I should be able to reintroduce gluten, then dairy. I have also stopped drinking caffeine and alcohol. After 4 days of Entocort I am experiencing acid reflux, hoarseness, tightness in my chest and sleeplessness at night even though I am still fatigued. What kind of side effects are other Entocort users experiencing? I don't want to take it for any longer than necessary either. I was so thankful that the D stopped. Now I want to pain to stop. I hope to be able to resume eating gluten and dairy again. I have found useful information at Celiac.com and Microscopic Colitis Suppot as well as here. And google+!
 
hi guys, had double scopes today and they found.. NOTHING. huh? I'm so confused. they took many biopsies.. how were you guys diagnosed? Were your scopes clear?

I'm not sure why but the GI (the medical director to boot) wants to follow up with me on 7th June instead of me going to GP for results.. NO idea why if it was all clear :-s I just don't understand, I DO know that I hurt, that I'm anaemic (and I don't have periods so not that) and it hurts to eat sometimes. I just hurt and I have no idea why! I thought it was all answered when the CTE came back showing inflammation and the GP called me and said yep, IBD just need a scope to determine what kind of IBD.. but they found nothing! yeah, I;'m rambling.. still a bit weird from the sedation..
 

David

Co-Founder
Staff member
With microscopic colitis the scope will usually be clear but the biopsies come back positive.

You may want to discuss the idea of a capsule endoscopy with your doctors to access the areas of intestine they couldn't see.
 
Hi David,

I was just diagnosed with LC after a Colonscopy, and prescribed Budesonide, but I am not going to take it, because it costs $723.00 for an 8 week supply. That is outrageous. So, my doctor said he would cancel that Rx and call in Prednisone, which I am probably not going to take either, because of the awful side effects of steroids. After reading what you were using, the Hist D, I ordered it from Amazon the OrthoMolecular brand. I'm going to try to naturally get rid of/control this thing. I have never had the water diarrhea that everyone seems to have, just the frequency of going a lot in the mornings, so maybe I have a mild case, which I am hoping for. Anyway, the posts on this site are very helpful. I had a colonoscopy three years ago as well, and I did not have this, or rather it did not show up, so somewhere between then and now I must have developed the LC.

Is there anyone else who only has a mild form of LC and has controlled it naturally, or cleared it possibly?
 
Would Microscopic Colitis be considered an IBD? I mean it seems fairly similar to Crohns in some ways. Mainly it being Chronic and all to a degree. Or is Crohns more serious being that it's life long and Microscopic Colitis can go away? I'm curious what the difference could be. What is the prognosis for these types of colitis compared to Crohns and UC? And are the lifestyle and social changes and medical treatment required to manage this condition the same as Crohns and UC? I had no idea there where so many different forms of colitis. I was diagnosed with Crohns colitis and more recently IBS symptoms. Being I had symptoms of a flare even though I wasn't in a flare. or so they said based on a couple of tests. Some of my symptoms seem similar to microscopic colitis and others are more crohns, lol. I believe I have Crohns and IBS. But just for curiosities sake would it be possible to suffer from microscopic colits and crohns at the same time? Sorry if I am rambling I'm just curious to hear from those who have to deal with it and possibly have some knowledge on it. Anyway, stay well everyone- Tim :)
 
In response to Missy L, it sounds similar to my case. Entocort and Asacol not working. No "watery" diarrhea anymore. whatever I eat for supper is gone by mid morning the next day with cramping and soft stool. Been dealing with this since Dec 2011. My GI is at a loss of what to do. I'm going to try the Pepto Bismol. Am curious if the anti-histamine you try will work.
 
To Tim,
Yes Microscopic Colitis is an IBD and it is chronic in some cases, but in other cases it can go away. Chron's is definitely the worse one..as for your other questions thats all I can answer! Hope it helps:)
 
Hello all,

I am a 24 y/o female and I was diagnosed with microscopic colitis about 3 weeks ago. I started taking Lialda (mesalamine), but so far it is not helping. Does anyone have any suggestions of other things I can try? Thanks for sharing your story.
 

David

Co-Founder
Staff member
Hi Jenna and welcome :)

Have you made any dietary changes?

Entocort is a medication that some have improved with. Others have done well with higher dose pepto bismol as mentioned in the first post. But this entire thread is full of anecdotes of what works and doesn't for people. :)
 
To Kwink

In response to Kwink, I got the DHist in and on day 7 now taking it. You first do loading with 2 capsules 3 x a day for 7 days, then go down to two for maintenance. I do believe it is working. I'm not really having any symptoms, but, fortunately, I think my diagnosis was early in the game, so I never had the water diarrhea that so many others have, and I am truly grateful for that. I am not going to take the steroids prescribed unless I absolutely have to after all else fails. I am also juicing green drinks with kale, chard, arugula, apples, coconut water, and we play around adding different greens and such to change it up, but the enzymes in that drink are awesome. I also bought Keifer to drink for probiotics,as that is pretty much in raw form. I think you lose something in the capsules, and I was taking that before I read about drinking Keifer. David, the administrator who started this website has some good dietary ideas, and I got the DHist idea from him. Ortho Molecular makes all kinds of quality supplements, and you can buy them on Amazon. I'm hoping to completely irradicate this bacteria. It is amazing how many people have this. Doesn't it make you wonder how so many thousands of people have so digestive diseases? I know a lot of it is diet, but is it plastics, additives, drinking water, etc.....? I'm doing a lot of research on this, because there is something really wrong when even children get these diseases.

Oh, also, the DHist is wonderful if you have allergies, because I am breathing so much better, and I just react to pollen sometimes, but the sneezing has basically stopped since I started taking it. Thank you David for writing about how you are handling your symptoms, because I believe the body has everything it needs to heal itself, and we need to nourish it in every way possible to allow the healing to take place. I am terrifed of the cortisone family of drugs, and will not take them, because the side effects are horrible. I'm going to do everything possible to never have to succomb to those drugs.

I'll do my best to keep you posted on how it is all going and post the things I am doing to combat Microscopic Lymphocytic Colitis.
 
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David

Co-Founder
Staff member
Thanks for the update Missy! I'm glad you're doing a bit better and hope it continues! :)
 
Thanks, David, so much for developing this post. I just got a call back from the nurse at the GI Doctor's office and after a colonoscopy/endoscopy, the biopsy showed microscopic colitis. (They didn't tell me which one).
Before the procedures I was given lomotil which didn't help at all and welchol which didn't help much but the in the message I was told to just keep taking the welchol (even tho I told the Dr it didn't work, just slowed things down a bit).
I've read through all the posts, can't say I've quite absorbed it all yet. But it's so discouraging to have seen several doctors, had numerous tests and am not any better....and am afraid to get very far from the bathroom.
I think you asked if anyone had eye problems. I did about 2 mos ago and thought I had "pink eye", I went to the ophthalmologist and she said antibodies were attacking my eye, indicating an underlying autoimmune disease. She prescribed high doses of ibuprofen. (Not good for MC, I know now)
I also have the brain fog, trouble concentrating, and feel very weak and tired.
I plan to start a juice fast shortly. I'm losing weight and not eating much because I feel like I'm allergic to food!
There's more but I feel like this is too long already. Hope you are still well. So good to have hope that there is an end to this!!!
 

David

Co-Founder
Staff member
Hi Lisa!

I'm sorry to hear you're having so much trouble :( Thanks for the info on your eye! Did she do some sort of test to determine that antibodies were attacking it?

I'd suggest getting your vitamin B12 and vitamin D levels tested with those symptoms.

It's great to have you here :)
 
Hey David,
Thank you.
On the eye issue, the doctor did an extensive visual eye exam; I need to get a copy of the report though because I can't really answer your question.
My blood work didn't show any vitamin deficiencies or auto-immune, but it was about a month ago, I've lost 10# since then.
I've had what I thought was IBS almost all my life but managed to control it pretty well with probiotics and diet until January. Then I tried a gluten free, sugar free diet and did better until about about 5-6 weeks ago, when I became much worse. (not long after the eye problem)
Do you know anything about Welchol? I may have missed it but I didn't notice that anyone else in these posts have taken it.
I'm supposed to go on an 11 hour trip to a family reunion at a NC beach Friday.I really want to go and I'm concerned about the long drive and not having access to restrooms and I also want to feel better. Any advice? I could probably work in another Doctors visit beforehand.
Thanks!
Lisa
 

David

Co-Founder
Staff member
Sorry for the delayed reply Lisa, I was out of town. Welchol is a bile acid sequestrant that is usually utilized to lower cholesterol. Quite a few people here are on it because it also helps reduce how many times people have diarrhea per day. A lot of people also take psyllium husk which basically does the same thing and is cheaper and more natural.

If you've lost 10 pounds in a month I'd give your doctor a call.
 
Thanks David -- I went back to the Doc and she prescribed 5 days of prednisone. This is the 3rd day and so for it doesn't help with the diarrhea, but I have more energy. I also get a B12 shot. Will have to find out about levels later. A month ago they were ok.
I might try the psyllium husk too.
The name of the eye problem I had is scleritis, btw.
Take care,
Lisa
 
I was diagnosed with Lymphocytic Colitis about 2 weeks ago after a Colonoscopy with Biopsies. I have been put on Cholestyramine (Questran) and a low fiber/low fat diet.

I have had soft BMs for years, but thought it was tied to Coumadin, as that is a known side effect. However, in the last few years, it has become increasingly frequent and much more urgent so I finally talked to my doctor about it. I rarely have abdominal pain and no explained weight loss (darn). Luckily, since I am 50 and due anyway, the first test was a Colonoscopy and my doctor was smart enough to do the biopsies when the Colonoscopy was clean, so I didn't have to go through a million tests like most of you.

Since diagnosis, I've had lactose and fructose malabsorption tests and both were negative. My symptoms have slowed down, but I'm depressed with this diet! I love vegetables and when I'm limited to 10 mg of fiber a day, I can't eat many.

A little more history - I have a mechanical heart valve and take Coumadin for it, so can't take Pepto, NSAIDs, and a bunch of other things.

So, about the diet...I've been on The Potty People website, but that is just so overwhelming. There are people on Gluten Free, Paleo, and many other diets. It seems that everyone there has multiple food issues. David, I notice you mentioned salad and fish. I was told to avoid raw vegetables for now, but might be able to add back lettuce and cucumbers without seeds in the future. That's better than nothing, but still not ideal. When you say salad, what do you mean?

Sorry to run on, but I'm sure you all remember how you felt in the beginning - totally obsessed and overwhelmed!

Thanks.
 

David

Co-Founder
Staff member
Hi Lisa and welcome! :)

I'm able to eat your typical salad no problem. Lettuce, tomato, avocado, etc. I would definitely cut out wheat/gluten, potatoes, soy, soy lecithin, and milk and see if that helps. Frankly, the paleo diet seems like a pretty good one to follow. It's basically where I'm headed as I've continued to find trigger foods.

But I think it's about finding what works for you.

We're here for you :)
 
Thanks for answering so quickly!

Avocados are one of the few raw veggies they said I could have.

So with the Paleo diet, do seeds and nuts not bother you? Those are two of the things I was told to avoid at all costs, along with the peelings of various veggies. I haven't experimented yet as my goal is just to get rid of symptoms for now.
 

David

Co-Founder
Staff member
Did the person giving you diet recommendations understand what lymphocytic colitis is? Seeds and nuts for other forms of inflammatory bowel disease, sure. But, other than an allergy, what did they feel that seeds and nuts were going do to the intestinal lining of someone with microscopic inflammation? Or was there some other reasoning I don't understand?
 
It was the GI doc, and I understand that many of them don't really understand LC. I think he just gave me the standard colitis diet. I go back in about a month and I want to be prepared to discuss diet with him. Of course, if he doesn't agree, I can still try it and see if it works for me. I have no food allergies that I know of and have pretty much always eaten whatever I want.
 
Thank this site for existing!
I am new to this site.
Dealing with chronic D for so long. One day while driving all day without food only liquids .........well you know why...........I thought, "not everyone lives this way," I was bound and determined to try to live a somewhat normal life. LOL

The mere thought of addressing this issue with my PCP was so frightening that I was on xanax before I could even set foot into his office.

Anyway...........in my post colonoscopy drugged state, the GI doc from what I can faintly remember said it looks like microsopic colitis. Polyps are benign. yeah.


I am awaiting the pathology report sent to me.The GI office called and said benign on the polyps but I have colitis. Followup isn't till July 21.

I am on Bentyl 10 mg 1-2 tabs 1/2 hour before meal and @ bedtime and a high fiber diet.

I am just so confused as to diet meds et al.

I balk at the meds............sorta like a soda bottle ready to pop.

I am on my own here............and I suspect that the GI doc is no savior in this case.

Thanks to all for your time and energy!

:
 

David

Co-Founder
Staff member
Hi Camie and welcome!

That's interesting that the GI said it "looks like" microscopic colitis. I say that because my understanding is it can only be seen once the biopsy is examined because it is microscopic. I'd be curious what he saw that correlates with MC.

We're here for you :)
 
I am assuming (haha assuming) that he saw no evidence of Crohns or Ulcerative Colitis during the colonoscopy. I am female and in the right age group and I have sypmtoms that are consistent with microscopic colitis. Rather bold of the GI to make that Dx without lab evidence!

Thanks for the welcome!
:)
 

David

Co-Founder
Staff member
Hi everyone, we now have our own dedicated subforum to discuss microscopic colitis :)
 
I am new to this site and I can't find the link that was just posted!

Ok.......so the Dx of micriscopic colitis has been confrimed. Thanks for the welcome to the club! I wish it was a welcome to just any other club!

I am a retired R.N. I have a handle on the medical lingo but that doesn't make me any less anxious or fightened of this Dx.


Doctors have always been a quick fix. Sinus infection.......meds.......ear ache ..meds....... You go to the doctor and get fixed. I don't really see a quick fix here......actually I see no fix.............just managing symtoms.

So right now I am feeling discouraged. I know I know I know this is all part of the process of accepting the fact that this is probably and most likely a long term chronic disease.


I hope to move thru the stages quickly.......just get on with it.........it is what it is........deal with it................ and I know I will.


But I feel really sad now.
:(
 

David

Co-Founder
Staff member
Hi Camie,

You're within that forum right now. This is a "thread" within the Microscopic Colitis "subforum". This is a link to our subforum: http://www.crohnsforum.com/forumdisplay.php?f=258

As a retired RN, I'm sure you know the stages of grieving, but sometimes it's nice to reread it. Give this a read. It's completely understandable what you're going through.

Have they discussed treatment or dietary changes for you?

*hugs*
 
Hey David,
Just went to a puddle of tears..........I know it is part of the process. And I did just reread the stages of grieving as you suggested. My mom used to tell me when I was sad that things always look better in the morning. I am going to run with that one. Catch you in the am. Really thanks for your help and input. Hugs to you
 
Ok, the GI suggested I follow a high fiber diet interspaced with Bentyl10mg. 1-2 before meals and at bedtime.

That were the instructions I was given post colonoscopy. I don't have a follow up visit with the GI until July 21.

I am trying to follow the high fiber diet, but I don't eat very much so it is difficult to add the necessary amt of fiber to my diet. According to my husband the GI doc was not in favor of fiber supplement. Any thoughts on that? Any good supplements?


The Bentyl as noted in the side effects made me sleepy. I was dopey all day!


I am now looking into the Gluten free diet......... just starting to buy some gluten free products.

Ugh corn pasta even smothered with sauce just wasn't right.

I am being proactive.

The journey of a thousand miles begins with a single step!
 
I "love" that some people are told high fiber, others, like me, are told low residue, but really nobody seems to know exactly what works.

I've been taking Cholestyramine and that seems to be controlling the D, pretty much regardless of what I eat, although I am staying fairly close to low residue.
 

David

Co-Founder
Staff member
I hear ya Lisa. I've been playing with diet since my diagnosis and still have very little idea what helps or hinders. :(
 
Just feeling sad............because this rx isn't working. It's just benytl and a high fiber diet. I wanted a quick fix........some magical pill that would make this all go away. I am new here. I don't see the GI doc till July 21. Looking at everything I can find. sigh i am so tired
 

David

Co-Founder
Staff member
:(

I'm so sorry Camie :(

If you want some suggestions, I'm happy to make some. Or if you just want to vent, we're here to listen as well.

*hugs*
 
Why don't you call the office? No use in putting up with it for 3 more weeks. The low residue diet I was on managed the symptoms pretty well, but my symptoms aren't as bad as some - frequent D, rare pain. The Cholestyramine I'm now on also manages the symptoms, and I can eat almost whatever I want. So far, so good!
 
Hi
I was kinda sorta on a totally liquid diet about a month or so ago due to a dental issue. Boost et al. I saw no change......but I was eating just a bit of real food. That is not total liquid

Looking at the diets as recommended........but I eat so little as it is........geez
I am happy to actually want to eat something. I can't image dietary restictions when I am dying for calories in any way shape or form.

Trying the pepto bismo route..........though I can't imagine that is good for a sore stomach.

And I keep looking for a cure............some magic pill some magic diet.

You know .....you have to go thru the stages.


And I think you did an excellent job in a post. Some disgrunted person being on the black list.

Very nice. Tactful but honest.

Thanks for your ears
hugs
 

David

Co-Founder
Staff member
Hi Camie. Bummer :(

Hmmm. Well, Entocort has been shown to be a decent medication for LC. Maybe talk to your doctor about that? I've thought of trying it but it's wicked expensive and I have a $7,000 deductible on my insurance.

And thanks for your kind words. :)
 
Still very new to this support group. Newly diagnosed with microscopic colitis. I haven't even had a followup with my GI doc. Its been six weeks since the dx.

That aside.
My mom passed away on Friday the thirteenth, she was buried yesterday. She was ninety two......had a long life full of weddings, grandkids and even a great grandkid. You get one real mom in your life....and when she is gone she is gone.


I have eaten very little in the past few days but my GI system is in an wild uproar. I ate as little as possible before the actual funeral and burial........took all the meds I could. My stomach was in an uproar. I actually thought I might miss the morning funeral services because of this.I made it !

There was barely anything in my stomach and it raged.Even today after all is over.............well it is still in a rage
 
I'm so, so sorry about your Mom and that you have had the colitis to deal with at the same time. I am glad you made it to the funeral; how hard that would have been to have had to stay at home. I learned like you did that the safest thing not to do when I had to go somewhere was just not to eat. And smoothies or homemade juices worked better (small amounts didn't make me as sick as food)to get a little nutrition and energy. I have lymphocytic colitis and have tried numerous treatments that didn't help. Two weeks ago I started Entocort EC, and over the weekend finally began to feel better and eat more normally. My Doctor told me I would only have to take it 6-8 weeks and then if it worked should do OK without it. Anyway, I haven't dealt with this very long but it's been really hard and I wanted to take the time to write you because my heart went out to you when you wrote about your Mom. Will keep you in my prayers....Lisa
 

David

Co-Founder
Staff member
I'm so sorry to hear about your mom Camie :( *hugs*

Lisa, that's great that you're starting to feel better! Please keep us updated how that goes :)
 
GI doc appt in the am. First since the colonscopy. High fiber diet and Bentyl fail. I have my own questions........ Antiinflammatory meds? gluten free? allergy testing. What else should I ask?

I am quite sure that the recent flare and wild GI syptoms are related to the stress of my moms passing.:(

Thanks for all of the kind words. The words of comfort and support have helped me through this difficult time.

Hugs
 
Hey y'all sorry I haven't been postin much! First off I'm so sorry to hear about your momma Camie! It must be so difficult dealing with this loss and colitis!
Second, I've been having major problems with my colitis and my doctors really don't kno what to do. I haven't been able to contact my specialist for a while now and I've had almost 2 weeks of non stop pain and horrible diarrhea. It feels like I've gone 3 steps back with the medication that she's put me on.
 
Hey y'all sorry I haven't been postin much! First off I'm so sorry to hear about your momma Camie! It must be so difficult dealing with this loss and colitis!
Second, I've been having major problems with my colitis and my doctors really don't kno what to do. I haven't been able to contact my specialist for a while now and I've had almost 2 weeks of non stop pain and horrible diarrhea. It feels like I've gone 3 steps back with the medication that she's put me on.
What medications are you taking?
 
Hi,
The GI doc presrcibed budesonide 3mg x3 per day............I silently prayed on the way home from the Dr that my insurance would cover it. Yeah! My insurance covers it!!! Hoping for the best. Thanks for your thoughts.
 
Camie, that is what I'm on too. Same dosage. I've been on it almost a month and it's working! I also have to stay on a wheat-free diet. But, I wanted to tell you not to get discouraged if it doesn't seem to work at first. It was at least a week and a half before it started to help. And there were good and bad days for a while and good and bad parts of days. I also had an extremely stressful day which resulted a a bad flare-up, so I'm trying to learn to manage stress better - through my faith and by walking in a park nearby. But, right now I'm so much better! Hope the same happens to you!
 
I hope this posts. I was prescribed Entocort 3mg x 3 per day. Hope it works!

My mom has passed two week to this day. My stomach has been in an absolute uproar. And my spouse has launched an
attack on me a trivial longstanding household issue. Really?:sign0085:
 
I actually asked him............do you know what I have...........well he did know. I said did you look it up or google it? No I rely on what info you give me. Well, If he were diagnosed with something I would have been all over Google. Sigh.
 
I'm so sorry you are going through this Camie. I feel your pain. My husband thinks I'm being lazy when I go to work late or sit around waiting for my guts to feel calm enough that it's safe to leave the house and run errands. Like your husband, he know's what's wrong but it doesn't seem to register in his brain. Hang in there, hugs.
 
Does anyone here that has either microscopic colitis also present with chronic gastritis? Just had an EGD on Monday. GI said that gastritis was noted and biopsies were taken. I'm still waiting the results. Two years ago I had a sigmoidoscopy that revealed a normal colon but the biopsy did show evidence of MC. Since there wasn't enough inflammation to give a diagnosis at that time, I was told I had IBS. But now that they are finding further inflammation, I can't help but think it's related. I have a history of long term advil use which I've read can be a factor in the development of MC. When I told my GI that my IBS had never improved nor had my stomach problems, he did advise me that perhaps it was not IBS but MC. Also does food or hormones tend to affect when you have an episode of diarrhea with MC? I tend to notice a problem with carbonation, fats, or very acidic foods/drinks as well as high levels of stress or right before a period.
Thank you in advance for any help you can offer :D
 

David

Co-Founder
Staff member
Certain foods definitely make me worse. If you have chronic gastritis in addition to MC I would suggest going on a very strict elimination diet and utilize a food journal and seeing what happens.
 
Just finding this forum has been great. I was diagnosed with microscopic colitis after three months of continuous .... well, you know. My doctor immediately referred me to a GI specialist who did a colonoscopy that made the diagnosis. I was on Budesonide (9 mg - 3 capsules all at once daily) for 8 weeks and thought I was getting better. My GI wanted to start moving me off of it so I went down to 6 mg and within a week had a complete relapse. My "cure" might have been the 1 week of Vicodin and prednisone I was on for unrelated surgery. I am back to 9 mg now. I am disappointed as I was hoping what ever this was was going to be an acute situation, but it looks like it is chronic. Does anyone know how long one can take Buesonide? I have read on it, but there does not seem to be anything about how long one can take it. Thanks!
 
I'm so sorry you are going through this Camie. I feel your pain. My husband thinks I'm being lazy when I go to work late or sit around waiting for my guts to feel calm enough that it's safe to leave the house and run errands. Like your husband, he know's what's wrong but it doesn't seem to register in his brain. Hang in there, hugs.
Wow - I get pretty much the same reaction. Sometimes I don't even want to get into the shower until I know my stomach (and all) are "finished" with the daily "upset." But my life partner (boyfriend?) doesn't get it. We are avid cyclists and he is - "Hurry up, get your kit on, let's get on the road. We're doing 70 miles today" (After I've been groaning in the bathroom for two hours) I LOVE your statement about "registering in the brain." Argh!
 

David

Co-Founder
Staff member
Hi Caryn and welcome.

While Budesonide is a targeted rather than systemic steroid, it's still a steroid and the less time you're on it, the better. But I don't remember ever reading specific durations for it. Maybe someone else knows.

Have you tried any dietary changes such as going gluten free?
 
Thanks, David. I asked my doctor about diet and she was noncommittal. I did try gluten free for about a month and didn't really notice any difference. I have never been a big gluten/bread/pasta person anyway (except beer:ysmile:). I am interested in trying the Pepto Bismal approach. I did try it for a few days after I started to relapse and before I could reach my doctor (who increased the steroid dosage). It helped but gave me a stomach ache.
 
I am a new member as of today. I put my story under the "My Story" thread. I guess I probably should have put it here as I haven't had any responses. I'm not sure how to move it here.

I found this forum today and I'm hoping that by talking to others who are suffering with LC I can learn how to better manage things. I was in the hospital for 6 days. Have been back to work but still suffering. I think I am making dietary mistakes and would love any advice anyone can offer.

Thanks!

Kris
 

David

Co-Founder
Staff member
Hi Kris and welcome.

I'm sorry to hear of your LC diagnosis :( What symptoms do you currently have and what is your current treatment regimen?
 
Hi David,

Thank you.

I posted all my info in the my story thread. Not sure how to move it here. My history is quite extensive but to answer your questions:

My symptoms now are chronic diarrhea especially right after meals. Gas, bloating and pain. The pain used to be lower left sided but now seems to be everywhere.

Currently I am taking Pristiq 100 mg for the IBS which my doctor says will help keep me from going back to being constipated (still think that the drug is what may have caused the whole problem) and I'm taking pepto 4x's a day.

The diarrhea has calmed down to once or twice a day but my stomach hurts all the time and I am exhausted and unable to do anything but go to work, which even that is challenging at times with the constant running to the bathroom.

I am also anemic which I have never been in my life.

My rhuemotologist is trying to get in contact with my GI doctor since I have a lot going on and try an coordinate some kind of plan, steroids maybe to help me all the way around. Sure hope they come up with something before the weekend. I'm tired of spending all my weekends on the couch, in bed or on the toilet!

-Kris
 
Hi from South Africa,
l was diagnosed with LC following biopsies about 10days ago, still in shock/denial. l've been put on Pentasa (1g am + 1g pm) for 6mths to start.
Under Gastroenterologist, who's also my Physician Specialist for other conditions.

SYMPTONS: frequent watery diarrhea, pain, exhaustion, nausea & weight loss.

OTHER CONDITIONS:
Sarcoidosis (rare? auto-immune,4yrs) 5mg Prednisone p/day.
Hypertension (very high, 4yrs) 7 meds p/day.
Depression (19yrs) 60mg Cymgen p/day.
Anaemia (?3yrs) iron supplement.

l'm due to repeat blood tests in 10 days, including for kidneys,
which are functioning poorly, then see specialist in 3wks.
ln the meantime am trying to educate myself on questions to ask.
After seeing doc, want to back to dietician for advise on how to proceed.
Currently can't face food & survive on tiny meals or plain savoury
crackers, which obviously explains lack of energy.

Would appreciate any comments, particularly if anyone else
has Sarcoidosis.

Have a good day, Lorraine
 
Last edited:
Hi...for some reason, couldn't edit to add additonal info.
Have used NSAID's extensively in the past, 4 back operations, including 4 lvl lumbar fusion & 2 lvl cervical fusion. Trying to stay off them now.

Lorraine
 
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