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



 
07-05-2013, 01:10 AM   #361
Highland Gopher
 
Join Date: Jul 2013
Location: Anoka, Minnesota
Just found this site today. diagnosed with LC about a year ago. After suffering with periodic extended bouts of WD often with urgency for about 2 years prior.

Tried Entocort with no lasting success. 2 Imodium in the morning makes most days livable, with worry ever constant that WD can show up at unwanted times. Sadly, as we all know this can lead to social life changes. I have passed on so many invitations over the last three years that people rarely ask any more.

Anyway, I recently (well actually about 6 months ago) was told that i should try the SCD diet. I only found mention of this once with no real follow-up on how it may or may not have worked for LC.

So I am curious, anyone had luck with this?

I am 4 days into the intro diet and I must say it is very difficult to eat this bland diet. And thus far still have D once or twice in morning and then if I don't need to leave the house I can actually make it the day. Even was able to pass gas But, no normalcy in stool formation.

I am tired of dealing with this.....

40 yr old male,

Interestingly, I lead a not so active life. excersised some but not a lot. Then about3 years ago (cant really recall whether i started before of after first bout of WD) I started playing hockey again. Very physical activity. Passed a kidney stone earlier this year (a first and man did that experience leave me wanting to stay better hydrated).

I noticed the question about vasectomy earlier. is there any relation between this and LC?

Anyway starting to ramble on. Hope that maybe discussing with others with help all of us to find a fix.

HG
07-16-2013, 03:04 PM   #362
Dingus
 
Join Date: May 2013
Well wanted to update, I am three weeks done with the prednisone. I have felt pretty good. I am eating more, still with the fresh veg/fruit, fish, chicken, and trying to add things slowly and keeping a diary.... but no abdominal pain, very little diarrhea. Still no red meat or dairy. I continue to take fiber supplement and fish oil daily, Pepto only when needed. My sores are gone on my legs and no canker sores. I thought I was cured Yesterday, the pain returned my shoulders and knees are killing me. I am so scared that it was a very short break and things are going to just get worse. I am not sure what to do... go back to my general practioner or try to find someone else to help me. Tylenol is not cutting it and he said not ibuprofen. I am hoping the pain goes away....I was feeling so good
07-17-2013, 10:21 PM   #363
Laureleve
 
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Join Date: Jul 2013
WOW - this is really great!

A. I've never joined or participated in a discussion board, so thanks for your patience as I get used to protocol here.

B. How exciting that I am not the only "young" person with LC - I thought I was alone due to the "this is an old lady disease" comment from my Gastroenterologist (whom I LOVE - truly - she has made a super embarrassing difficult thing to discuss funny and comfortable and OK - Seriously lucky to have found her!).

I have always had a "sour stomach" - even as a kid. Colon Cancer is rampant on my maternal grandfather's side of the family, so I always had that in the back of my mind.

At about 25 yrs. old I started experiencing CRAZY D - bloating, gas, all the usual. I was so embarrassed, I dealt with it until I turned 30 and made a deal with myself that I would bite the bullet and go see a GI Dr. Colonoscopy found LC - treated with Entocort for 3 months and then.... I dropped the ball. The Entocort helped but didn't completely resolve all of the issues and I just let it go and didn't follow up with my Dr after the 3 months.

Fast forward to last month when I decided I needed to grow up and deal - had another Colonoscopy - LC again but this time.... polyps - AND some "pre-cancerous cells". The pathologist is uncomfortable with making a benign determination until the LC is cleared up and they retest to ensure the inflammation is not interfering w. the cancer screening. So I'm a bit freaked out - at 31 years old, I feel a little paranoid about the cancer thing - even though my rational brain knows it's probably nothing.

Anywho - really excited to read all of these awesome posts and learn so much from people who are in a similar situation as me! I can't wait to try some of the things I've read here (more B12 and VD, Greek Yogurt, multi-vit, etc.)

Thank you again for creating a place for me to learn and collaborate!
07-18-2013, 10:04 AM   #364
rhiire
 
Join Date: Jul 2013
Location: Devon, United Kingdom
..

Last edited by rhiire; 07-18-2013 at 11:03 AM.
11-05-2013, 04:14 AM   #365
Megan20
 
Join Date: Nov 2013
Location: Huntsville, Tennessee

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Thank you David

I was diagnosed about 3 months ago and had no clue wht to do. They told me I have lymphocytic colitis and that I probly grow out of it by the time I'm 30 I'm 21 now and has been hard me and my family thinks I have had it for over 4years and didn't know it this forum had helped me understand more of what I have and what I can do to feel better.

Also, I got a question does ur stomach area ever feel like it's burning?
11-05-2013, 08:47 AM   #366
David
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It never felt like my stomach itself was burning, but just under the skin in my abdominal area did.

What are your symptoms?
11-26-2013, 06:10 AM   #367
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Hi Everyone,
A GI did a colonoscopy 4 years ago and did the biopsies, but didn't tell me or my doc about the lymphocytic colitis. The GI told us it was normal. My doc just said cut out wheat and dairy and prescribed lop, but that made me in pain and crampy so I stopped it right away. I went strictly gluten free in the house, threw out everything, bought a new colander. My brain was so much better, but no change on D. I felt enormously better. 4 years later, I went back to the GI doc, who pulled up the slide, saw the LC, apologized for not telling me, tested my for Celiac - it came back negative, but he did say that gluten causes the brain fog. Toward the end of the 4 years, I developed asthma, but didn't know it was asthma until last week, just thought it was bronchitis. Immediate care put me on a sulfa? antibiotic and prednisone, 2 20mg per day at the start of the prednisone. In 3 days the D stopped.
I still don't know which med stopped it. I have left over pred and am starting it again now to see if it stops again. Today will be the first day on 40.

I wanted to add the asthma. The new doc had me do a pulmonary function test. I never knew I had asthma til now. I was massively athletic until the Great Recession hit. Quit the gym and stayed at the office non-stop.

After reading everything, I am thinking the exercise my help.

How about GMO foods? Dr. Arpad Puztai's research on rats showed major intestinal problems. Is that what is hurting us?
12-02-2013, 09:58 AM   #368
FrannyLA
 
Join Date: Dec 2013
Location: Los Angeles, California
Hi david and all others in this Club. I was recently diagnosed with Microscopic Colitis. My doctor doesn't seem to know a lot about it because she didn't tell me which type and when I asked her about dietary recommendations she said avoid coffee, alcohol and greasy foods (none of which I have ingested for years). So I have had to get all my information online and from the one book I found on Microscopic Colitis, called Microscopic Colitis. David I appreciate your sharing this information and your experience and the steps you have taken to help you with MC.
I know no one else with MC and have been feeling very alone with all of this, so I was happy to find this forum and now the Club.
Thank you for every thing presented here.
FrannyLA
12-08-2013, 08:01 PM   #369
David
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Hi Franny and welcome to the community. I'm sorry to hear about your diagnosis but am not surprised that your doctor doesn't know much. Would you be willing to share your symptoms?

All my best to you.
12-18-2013, 03:40 PM   #370
sfmreb2
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I have been told I now have lymphocytic colitis. Since the early 70's I have been told I have UC then they say I have Crohn's. It goes back and forth. I have been on Remicade for 12 years. They (GI Dr) tested for antibodies and none from the Remicade. So I figured he would keep me on the Remicade, he did a scope and said everything looks great. One area looked a little strange so he took a biopsy of it and came up with lymphocytic colitis. He took me off the Remicade, he said I did not need it. As far as I'm concerned it was working for the Crohn's. Oh well. So now I'm on Entocort and Pentasa. Seems to be working good. Now the VA has decided that I should take Apriso instead of Pentasa. I looked it up and it is cheaper. So now I'm in this new Club for lymphocytic colitis. Have a Great day.
01-02-2014, 05:30 PM   #371
Chipper
 
Join Date: Jan 2014
I was diagnosed with lymphocytic colitis in 2006; however, I believe I had it much longer than that.

I always know where all restrooms are located, and I eat food cautiously when I feel there could be issues.

I was diagnosed in 2013 with mild lupus and Sjorgren's, and from things I have read, some of these can cause digestive problems.

I take Plaquenil (an anti-malarial) for these two diseases; it has helped so much with my energy and inflammation. Unfortunately, a side affect of this drug is D. It usually acts quickly, so I take it at home where I can rush to the bathroom.

I have learned to use my muscles to control issues with D until I can get to a restroom. I have been fortunate in not embarrassing myself in public, but I have had some close calls.

I have tried Pepto Bismal tablets, 12 tablets a day and taking some fiber. It was amazing the improvement in my symptoms. I'm not doing that now, but may return to that if my symptoms don't improve soon.

I have started this new year with eliminating caffeine (drinking boatloads of water). I have read that aspartame is not good for digestive problems. In addition, I am eliminating gluten and dairy products and other things as necessary. I am going to see how things go for about a month. I am determined this year I will get this situation under control.
01-02-2014, 09:45 PM   #372
sfmreb2
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I hope your new plan works for you. No coffee sound like the hardest. I'm.not quite there yet. Good luck.
01-02-2014, 09:52 PM   #373
Chipper
 
Join Date: Jan 2014
I hope your new plan works for you. No coffee sound like the hardest. I'm.not quite there yet. Good luck.
I don't drink coffee; it's the diet drinks and Coke that are going to be hard to give up.

I'll post again perhaps in a couple of weeks to let you know how I'm doing.
01-04-2014, 02:14 PM   #374
FrannyLA
 
Join Date: Dec 2013
Location: Los Angeles, California
Hi David, Sorry it has taken me so long to respond to your post. It's been a difficult time health wise since I first put up my post.
Turns out according to my GI colonoscopy report, I have collagenous colitis and not lymphocytic as I originally thought.
The main symptoms I have are continuous diarrhea, abdominal cramping, and gas. I don't think I am absorbing any nutrients, or if I am, very little, because things go right through me. My doctor recently put me on Lialda and I think it's finally started working, but now I am constipated. i am going to be going to an IBD specialist who has a background in digestive disease and nutrition as well as in the diseases and hoping he will be more helpful in giving me some guidance as far as eating goes. So far I have not pinpointed any triggers. It seems like everything causes the diarrhea when I have a flare up and I am not sure how you go about distinguishing what causes what. I am and have been gluten free for quite some time now, but even that seems to make little difference.
I'm not sure if I've left anything out. If you have any further questions or thoughts I am open to them!
Thanks David and to the others who posted on this thread.
Franny
01-19-2014, 01:25 AM   #375
barbm
 
Join Date: Jan 2014
Hi, new to the group - so glad I found you!! I have had IBS-D for 20 years all controlled with food - usually no rich rich food and no alcohol or coffee and never let my stomach be empty and then eat!! major spasms that would result in severe pain and "D". Sept 2011 hysterectomy with antibiotics and 7 months later sick with every morsel of food I ate running to the bathroom - lost 40 llbs in 4 months. Jan 2013 lymphocytic colitis and endoscopy clear. no celiac. entocort for a month did nothing so went on the SCD diet in march 2013 developed severe uticaria on back and shins - never had that before - severe itchy for a month!!! Figured detox from SCD as I was a horrible eater my whole life - junk, mcdonalds etc. April so sick ended up in ER tested positive for pancreatic insufficiency fat malabsorption which I understand goes hand in hand with MC. thoughts?? Back on entocort as asacol didn't work caused heart racing. Finally felt like getting somewhere gained weight up to 123 from 113 and started to reduce entocort to 6 mg a day and add in new food eggs. major flare which was august and took me to nov to get out when I finally decided to remove the SCD yogurt! Voila! no more D and 1 BM a day. Problem is I am stuck with just 4 foods chicken, beef, bison and green beans. Slowly added in jasmine white rice last week but feel candida coming back. Do eat some flourless pbutter muffins with banana but give me mouth issues as I have oral allergy syndrome worse then ever now as I react to all foods outside of those 4 with geographical raw tongue and mouth ulcers UGH! Cant seem to get a handle on this and am thinking it's a mast cell histamine issue since I react in my nose and my mouth after eating and then stomach pains!!! I have fired my drs as they know nothing! have no idea why I cant eat anything!!
barbm
01-19-2014, 03:31 AM   #376
durwardian
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Sounds like IgA immune issues, same as me. See an immunologist, hematology, and get the immune globulin A checked. Without that working you may keep sliding back into a constant battle with gut bugs, mouth sores, and worse...

01-19-2014, 03:34 AM   #377
durwardian
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When my IgA is boosted i can eat what I want, when it gets low I suffer pseudo-crohn's.

01-19-2014, 03:37 AM   #378
durwardian
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Now it went too low and I got a major infection because my body thinks it has to attack everything I eat. But shutting down that reaction is not a good idea. That can kill you. Just try boosting it. Mother's milk is great if you can get some to drink. Blood and blood plasma...

01-19-2014, 12:01 PM   #379
barbm
 
Join Date: Jan 2014
thanks for your response!!! My IgA blood test showed 3.36 (range .75 to 4.55) so I don't think it is low as looks like going on the high end??

I know it's a histamine issue as I have just gone off ketotifen to do the histamine panel, tryptase test and 5H1AA test and my heart racing is back with a vegence!

Mastocytic entocolitis is something most GI's aren't even aware of here in Canada yet. I think that's what I have along with the lymphocytic colitis as I can't get anywhere on just steroid entocort and not going to pred!

What symptoms did you have and how did you find out your diagnosis? What do you take to keep it under control?

thxs
barbm
01-19-2014, 12:02 PM   #380
barbm
 
Join Date: Jan 2014
PS I am intolerant to casein now so can't have milk not even butter - am trying ghee right now but has to be cooked
01-19-2014, 02:51 PM   #381
durwardian
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I had all symptoms from IBD to Crohn's

01-19-2014, 02:58 PM   #382
durwardian
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I had a few wrong reactions and went to hematolpgy

02-01-2014, 02:47 PM   #383
lisa in lj
 
Join Date: Jun 2012
Location: Lake Jackson, Texas

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I haven't posted in a long time. After being diagnosed with lymphocytic colitis in the summer of 2012, my doctor put me on Cholestyramine and the standard colitis diet. What I found was that whether or not I followed the diet, my symptoms were much better, so I went back to eating what I want other than caffeine. After a few months on Cholestyramine, the symptoms came back in a mild form, so I upped the dose. However, when I went to the dentist for my 6 month cleaning, the xrays showed that I'd had a big loss of enamel since the xrays 12 months prior. After some research, I found that this is a potential problem with Cholestyramine. I decided I'd rather have diarrhea than be toothless, so went back to the doctor to see if there was something else. He put me on Enterocort, which I took for 2 months with zero effect. Now I'm on Colestid, another bile blocker, but in pill form. Like the Cholestyramine, the minimum dose worked in the beginning, but now that I've been on it about 4 months, the symptoms are coming back slowly. I'm going to up the dose and hope that helps.

In the meantime, I've ignored my diet. I don't eat many fried foods, the breath tests for lactose and fructose issues were negative, and I haven't noticed any particular foods that case flare ups. I guess it's time to try gluten free, but I've been avoiding that simply because it seems so difficult. Anyone have any tips on how to start?

Thanks.

Last edited by lisa in lj; 02-01-2014 at 03:08 PM.
02-05-2014, 07:41 PM   #384
durwardian
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I would pick the biggest gluten in your diet, find a replacement, and peck at them one at a time. When you buy pasta or breads, shop the gluten-free brands and soon it will be very easy and natural
03-06-2014, 11:23 PM   #385
SamIAm
 
Join Date: Mar 2014

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Hi all - just found this site and it's been a great help already. I was diagnosed today with lymphocytic colitis and just got my first month's supply of budesonide.

Me: 40 year old female who has been dealing with chronic diarrhea and all the other fun symptoms for almost 4 years. Never went to the doctor for any of it because when it started, I was deployed and figured it was food/stress/medication. Came back to the states after a year, then moved right away, then got orders to Afghanistan, then got diagnosed with cancer. Whew! So the chronic diarrhea was just one of those things that I constantly worried about, but never bothered to bring up to my many doctors because a) at that point I was used to it, and b) I had other things slightly more pressing to worry about. Now that I'm considered 'stable' with the cancer, I finally brought it up to one of my doctors a few weeks ago. He suspected celiac disease and immediately sent me to a GI specialist. She ran all of the blood tests for celiac, scheduled me for a colonoscopy, and told me she suspected MC. She also had me cut out dairy, artificial sweeteners and soda for the week before my colonoscopy to see if that helped. It did not. So long story short - met with her today to discuss results and voila: lymphocytic colitis.

I'm starting the budesonide tomorrow (9 MG/day for 6 weeks, then 6 MG/day for 6 weeks, then 3 MG/day for 6 weeks - and holy cow is this stuff expensive ) and am hoping I fall into that 80% who achieves remission with it. We shall see!

So looks like I have some reading to do here! Thanks to the folks that started this page - from some quick scans, this is the most comprehensive info I've found so far on this!

~Samantha
03-07-2014, 01:03 AM   #386
sfmreb2
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Join Date: Jan 2012
Location: walla walla, Washington
I hope it works for you. I'm on 3 mg now and so far it is working. I was supposed to do 3 months at 6mg but after 2 months I started losing muscle mass so I dropped to the 3 mg. I can not afford to lose any more weight. Hang in there! If you are still in the military talk your doctor into not giving you a 3 in your med profile. I talked my GI doc into giving me a 2 and made it long enough to retire.
03-07-2014, 09:17 AM   #387
SamIAm
 
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I hope it works for you. I'm on 3 mg now and so far it is working. I was supposed to do 3 months at 6mg but after 2 months I started losing muscle mass so I dropped to the 3 mg. I can not afford to lose any more weight. Hang in there! If you are still in the military talk your doctor into not giving you a 3 in your med profile. I talked my GI doc into giving me a 2 and made it long enough to retire.
Hi sfmreb2! Thanks for the advice - we'll see how it goes. I'll be interested to see what the AF does with me at this point. I survived one MEB last year (have a 2 assignment limitation code indefinitely from the cancer) and have yearly RILOs. I'm over 21 years in at this point, so I guess if I have to retire it won't be the worst thing in the world. Was supposed to attend Squadron Officer School this summer - don't know if that's going to happen now or not either. AND to top it all off, I'm in the middle of getting a really, REALLY good assignment this fall. Guess all I can do at this point is sit back and see what happens next.

One question though - did you get any VA disability for the MC? Thanks in advance for any words of wisdom, and thanks for responding!
03-07-2014, 10:31 AM   #388
sfmreb2
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Actually I got it for crohns. The MC was diagnosed last year. Make lots of copies of your med records the VA will lose them.
06-08-2014, 10:38 AM   #389
sfmreb2
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My latest saga with Lymphocytic Colitis. As the story goes; the GI Dr stopped my Remicade that I had been on for about 12 years saying my scope showed everything looked good. He said the only thing I had was Lymphocytic Colitis. The GI Dr had me take 9mg of Entocort for 1 month, 6mg for 4 months, 3mg for 1 month. Then 2 Pepto-Bismol (generic) tablets for 30 days.
The 9 mg of Entocort worked good. The 6mg worked pretty good. After 2 months of 6mg I notice the muscles in my legs was starting to get weaker. At around 3 months I dropped it down to 3mg and my legs got better. But the symptoms of the Lymphocytic Colitis came back. With the help of my lomotil I made it the 1 month without to much trouble.
So then I stop the Entocort and start chewing the Pepto-Bismol. I was chewing 4 tablets a day for a few days until I reread the instructions. The 2 tablets a day started working great, black but really formed. I sent a msg to the GI guy and asked if I could continue with the Pepto-Bismol. He said to take 1 a day for a week and then stop and let him know after 30 days how I'm doing. Now I am back the watery diarrhea and running instead of walking to the bathroom. I find myself having to remember where all the restrooms were around town. If not for the lomotil I'm not sure if I would get out of the house.
Their is only 4 GI drs in town. I'm thinking maybe I should call around and see if any of them know about Microscopic Colitis. So that's my story and I'm sticking to it.

Last edited by sfmreb2; 06-08-2014 at 10:44 AM. Reason: Added something
07-05-2014, 11:49 PM   #390
iriechic
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Location: St. Petersburg, Florida

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Hi other MCers,

First off, my heart fills up like a well would fill with love for each of you. This disease has turned my life upside down and inside out. I was Dx'd with it 2/2012. My GI told me it would be like "having a bum knee". Umm yeah, that's not been my experience at all. I'm sure I had it in 2011 while I was pregnant and had WD 10x/day. It is hard enough to be pregnant without MC; I was surely pregnant w/it. In 2010 I was Dx'd celiac. I went 100% GF during pregnancy, thinking that would be the fix. Wrong. See those two little cuties in my profile picture, they are my angels, and they suffer every day because of this horrendous disease. I have no energy or extra calories to do fun stuff. I must be near a toilet at all times. Fortunately, my husband (their dad) and g-parents can have fun with them.

I was diagnosed at 33 yrs old. Nothing has been the same since MC. I have tried EVERY diet under the sun (SCD, GAPS, Candida, elimination). I have had three allergy tests: skin pricking w/serum samples, Enterolab stool test, and IgG (?) blood. It would seem I am allergic to everything because each test has different results w/ different set of allergies. I cannot avoid all food, not possible. I am GF, DF, SF, processed food free, eat all organic fish/meat (sparingly), some bone broth, have tried fermented sauerkraut and kombucha, juice veggies and fruits (that have low glycemic index). I do not know how to treat this anymore and detest succumbing to harsh big pharma meds: it's not the answer. Although I am currently on a steroid (sigh).

I was a featured "Hot Mama" on www.hotandhealthymom.com in 2010. I miss that girl, the one who was active, full of life, and zest. I was an avid runner, kayaker, paddle boarder, camper, anything and everything outdoors was my life, and I was a social butterfly. Now I am stuck on what feels "house arrest" for the last 3 years of my life due to MC. I grieve the person I was and daily strive to rid MC. My friends miss the "healthy" me and always ask "when will you feel better?"

I have spent $10s of thousands on doctors: LLMD, ID, accupuncturist, 3 different functional integrative physicians, GIs, PCPs, massage therapists, a shaman, Qi Gong healer, you name it. I would fly anywhere in the world if it meant I could get rid of this. I have a closet filled with supplements, far too many to list.

I pray for those of you suffering like me. It's unfair. I can't understand the whys of this disease, only God knows.

I graduated with a BA degree in psychology from a private liberal arts school. I want to work again, however, this has disabled me completely. I can have diarrhea so many times a day, no nourishment that will stay in, and feel the weakness/ muscle waste of MC. I had a recent disability hearing. To be 35 yrs old and literally need disability is so difficult to digest (horrible pun).

Out of all the treatments tried (and there have been many, too many!, homeopathic and allopathic), the one that gave me the most hope was a forty dollar parasite cleanse from a family owned company, highly touted on cure zone. The problem is the parasite cleanse can only be taken for 30 days, to not cause resistance. I am not advising that any of you to do this. I am not your doctor. It's what gave me the most "ah ha!" moment. My GI, like most GIs, believe parasites are in undeveloped nations. This is untrue, they're everywhere! I even have a photo of a worm basically tatooed on my ankle, with blood around it, from the cleanse. Yet it is completely dismissed at UF. My integrative MDs say they have never seen anything like it. The typical labs DO NOT pick up parasites. Genova was the only lab to give some indication of this issue. Yet, I do not feel that Genova is enough so I am considering traveling to a top notch parasitologist, if /when I can find the time and finances.

Sorry for this essay! I needed to vent. If my experiences and suffering can help any of you find answers, I will be glad. This disease needs to be studied FAR more and funded for further research just like Crohns and UC. It is NOT an "older woman's disease", as I have been told too.

Peace,
Irie
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