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Crohn's Disease Forum » General IBD Discussion » Microscopic Colitis » Lymphocytic Colitis and Microscopic Colitis Club



 
04-27-2012, 12:04 PM   #121
hetty
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Location: Manchester, United Kingdom
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!!
05-02-2012, 06:19 PM   #122
Dave73
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Location: McKinney, Texas
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)
05-03-2012, 12:37 PM   #123
raemckee
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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.
05-03-2012, 04:24 PM   #124
Jackie010307
 
Join Date: Jan 2012
Location: Buffalo, New York
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!
__________________
Stomach problems since 1994
GP's through the years dismissed my symptoms
First GI appt. 2010
Dr decided nothing was wrong
New GI found 2012
After blood tests, stool tests, endoscopy, and colonoscopy new GI dx's microscopic colitis 03/23/12
Diagnosis changed from microscopic colitis to colitis 05/03/12


current medications:
Lialda
metformin
b12 injections
vitamin b supplement
vitamin d supplement
magnesuim
b2
05-04-2012, 10:43 PM   #125
laur19
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Join Date: May 2012
Location: Petrolia, Ontario
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!
05-05-2012, 02:06 AM   #126
David
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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!
05-05-2012, 08:53 AM   #127
laur19
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Location: Petrolia, Ontario
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!
05-05-2012, 09:42 AM   #128
David
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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.
05-07-2012, 11:57 PM   #129
David
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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.
05-08-2012, 09:48 AM   #130
Cathybiker
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Location: Portland, Maine
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.
05-10-2012, 10:02 PM   #131
Climbergirl
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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+!
05-12-2012, 12:36 PM   #132
David
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Just a little information on some biomarkers for microscopic colitis:

http://www.ncbi.nlm.nih.gov/pubmed/17556903
05-14-2012, 12:42 AM   #133
Leebie3
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Location: Queensland, Australia
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..
05-14-2012, 06:08 AM   #134
David
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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.
05-17-2012, 12:22 PM   #135
Missy L
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Location: Altamonte Springs, Florida
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?
05-17-2012, 01:25 PM   #136
Tim
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Join Date: Mar 2011
Location: Adelaide, South Australia, Australia
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
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05-23-2012, 05:01 PM   #137
kwink
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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.
05-23-2012, 09:31 PM   #138
laur19
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Location: Petrolia, Ontario
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
06-02-2012, 09:09 AM   #139
jennachristine
 
Join Date: Jun 2012
Location: Kansas City, Missouri
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.
06-02-2012, 09:33 AM   #140
David
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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.
06-02-2012, 05:42 PM   #141
Missy L
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Join Date: May 2012
Location: Altamonte Springs, Florida
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.

Last edited by Missy L; 06-02-2012 at 05:44 PM. Reason: misspelled a few words
06-02-2012, 05:49 PM   #142
David
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Thanks for the update Missy! I'm glad you're doing a bit better and hope it continues!
06-08-2012, 08:41 PM   #143
Lisa1878
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Location: Kennesaw, Georgia
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!!!
06-08-2012, 09:00 PM   #144
David
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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
06-09-2012, 08:49 AM   #145
Lisa1878
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Location: Kennesaw, Georgia
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
06-15-2012, 11:07 AM   #146
David
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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.
06-15-2012, 11:44 AM   #147
Lisa1878
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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
06-15-2012, 11:48 AM   #148
David
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Thanks Lisa! We have a great thread about Psyllium here if you're interested.

I'm sorry the pred isn't helping the diarrhea
06-17-2012, 12:44 PM   #149
lisa in lj
 
Join Date: Jun 2012
Location: Lake Jackson, Texas

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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.
06-17-2012, 12:50 PM   #150
David
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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
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