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



 
05-12-2013, 05:04 PM   #331
Liesia
 
Join Date: Oct 2012
The last time I took it I did 40mg for 4 days, 30 mg for 4 days, 20 mg for 3 days and 10 mg for 3 days then off. Make sure you take it in the morning or it may cause the sleeplessness. I had NO side effects at all. You are really not on it long enough to gain weight. I really felt great after taking it for just a few days. Good luck.
05-20-2013, 07:27 AM   #332
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
I've only posted twice on this forum, but find reading it very helpful. I have a question and need some advice. I have Lymphocytic Colitis and have been suffering severe symptoms for years. I have been unemployed for some time now and have been living off of savings, which is getting lower and lower. I want, and need, to get back into life and work again, but feel so overwhelmed. I can't see an employer understanding, accepting and tolerating my condition. There are days when I could work, but there are many days that I literally could not, like today. I am going to the bathroom up to 30 or 40 times per day, often in rapid succession during my "episodes". Sometimes I'm cramping so bad, I can barely stand up straight. I feel weak, lethargic and totally exhausted all the time. I'm very, very worried that I would not be able to hold a job! I must work though! How are any of you dealing with this and career? I'm desperate for some advice. I feel so scared and overwhelmed by all of this. I have no work life, social life, or any life! Work is my biggest worry though. I don't want to run myself down to nothing, because I don't know how I would survive.
05-22-2013, 06:08 PM   #333
Dingus
 
Join Date: May 2013
I was diagnoised today with LC, by a colonoscopy last week. I had my first symptoms in Feb. thought it was the flu. I had diarrhea since the end of Mar. I have lived on broth, jello, gatorade, rice, bananas. I have terrible body aches, nausea, sores on my legs, and now canker sores, exhausted easily and just terrible. I have a good day now and then if I don't eat. I have lost 20 lbs. My doctor said take immodium. I have since march. He said to see what the surgeon recommends. He said that the sores have nothing to do with this. I need to see a dermatologist. He said to try pepto for three weeks then add fiber suplement for two weeks and see him in a month. Will this really help everything else go away? HELP I need some advice. Do I need to find a gastro specialist instead of my general physician and surgeon?
05-23-2013, 09:52 AM   #334
Lorna
 
Join Date: Sep 2012
Location: blue ridge summit, Pennsylvania
I haven't written on this site for a long time but felt I needed too. . . I had actually promised the moderator to tell him what I learned at Johns Hopkins and haven't -- so here it goes.

YES you need a GI Dr. and I wish it were that easy. This disease is not well understood or known. I saw three GI Dr's and hired the last. The first Dr. was like it isn't a big deal -- well it is -- this disease will disable you. The second Dr. medically did all the right stuff and got me stable. ONE he ordered a full panel of blood tests (supported by the moderator of this group) to see what I had become deficient in -- from Vit. D to Minerals. He also said allergies needed to be rule out to wheat &/or milk. Results -- I was so low in vit. K I couldn't have surgery and my D. was so bad they said I was a fracture waiting to happen.

He told me to stay away from foods that caused gas for awhile. He told me even though I didn't have an official wheat allergy to severely limit my wheat intake because there were reports that that helped. I also needed to limit lactose because of my nationality (American Indian). I also can not tolerate greasy/oily foods . . . and limit chocolate or candy(gumdrops/etc.-- remember no wheat/butter knocked out bakery goods/which of course I loved) and he also said to be very careful with artificial sugars.

He put me on medication -- Asacol and Budesonide EC -- He started me on high doses and then lowered them. He told me some individuals will have to live on a combination of them forever, some do go into remission/intermittent remission and others will have a low grade issue . . . Side affect of the medicine I took -- all the aches and pains in almost every joint also cleared up with the Budesonide EC -- just enough of it leaked out into the system to clear up the inflammation. But actually the beauty of this drug is that it mostly stays in the gut. Budesnide EC is expensive and I am lucky to have good insurance just so you know -- AND this second Dr. -- 'gentle'man and sweetheart was the person who discovered the disease and has done much of the work around it.

The third Dr. I hired was closer to home, friend's with the second Dr. and he and I clicked. He told me it was rather simple -- become aware and stay away from any food that caused me issues. He pretty much follows the plans of the second Dr. and ALSO told me I needed a BACTERIA OVERGROWTH test -- he said that disease causes the same symptoms but he could cure me of that . . . .So if you know some one who hasn't been officially diagnosed with this, that is a good first step.

Finally your nerves can affect this as much as I hate to admit it -- stress makes it worse . . .I've always been the Rock of Gibraltar in my family . . . now I deep breath my way through the difficult times and I always drink my citrucel three times a day . . . I like it in a glass of hot water (1 min. in the microwave) then add tablespoon of the Orange Cit. (don't add Cit. before you heat the water or it forms clumps!) and I have a wonderful warm drink . . . As wonderful as I can tolerate these days -- oh -- no alcohol for me either . . . they do now have gluten free beer . . . We should start our own fiber cookbook or drink book! wink.

I am off medicines and totally always aware of my gut to keep it in control (I was on the medications for 7 months and now been off for 2 1/2months). . .when I get in an 'iffy' place I limit my food to what I can tolerate . . .I always eat small meals not to overwhelm my system. . .but I can now go places without the 'fear' . . . and I have energy usually but still have bouts of the total fatigue and I usually try to nap those off when possible.

I hope this helps. (oh on the D. they keep upping mine -- I am not processing this correctly apparently. . .AND the sores -- they very well can be from this or the bi-product of the messed up system issues -- remember this is an autoimmune disease!)
05-23-2013, 01:48 PM   #335
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
Do I need to find a gastro specialist instead of my general physician and surgeon?
Yes.

Can you describe the sores on your legs or take a picture please?
05-23-2013, 03:23 PM   #336
Dingus
 
Join Date: May 2013
Thank you all for your advice it helps. I am looking for a gastroenterologist in my area. The sores on my legs are below my knees, they start with an itchy patch and then get little blister that when it pops it itches very badly. It then looks like a bruise. I am not sure how to add a picture. I will try later after work. The pepto seems to help slow the diarrhea, but the pain after eating some jello and cooked carrots for dinner as started the pain for the day. I have learned more on this site than visiting with my MD. NO one has talked to me about my diet except the MD said to stay on a brat diet since March. I am just so tired is that part of it?
05-23-2013, 08:18 PM   #337
Dingus
 
Join Date: May 2013
Sorry tried to upload photos but it says it exceeds the limits for this. I could email them to you.
05-24-2013, 12:14 PM   #338
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
I hope everyone is doing well. I have a few questions regarding food and exercise. I have pretty much cut out dairy, but still eat all natural yogurt. Is that alright? I've also noticed that I love pickles. Are they bad for LC? I've heard Sourkrout is good for this condition. Any advice on that?
I also exercise. I used to be an avid runner, but had to give that up due to weakness, so now I use an eliptical. I don't think that cardio is the issue. I do lift weights. Does anyone know if that is bad for this condition. I have had horrible bouts of watery D several times per day for months now and have dropped several pounds. I'm a 40 year old male and weigh about 100 lb's. I'm so weak and dizzy all the time. I've been surviving on rice cakes, all natural peanut butter and a banana for breakfast, yogurt and canned peaches or pears for lunch, and a meat and rice or instant potatoes and overcooked veggies for dinner. I do drink whey protein supplements. I also have a cup or two of coffee in the morning. My bouts are usually in the morning and afternoon, several at a time. Noting in particular seems to set me off, it doesn't really matter what I eat or drink. Whether I have a cup of coffee or 100 % fruit juice in the morning, I still have episodes. Any advice would be helpful.
05-24-2013, 12:15 PM   #339
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
It comes down to what does and does not agree with you. It's one giant frustrating experiment.
05-24-2013, 03:36 PM   #340
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Isn't that the truth!
05-25-2013, 07:08 AM   #341
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Liesia or anyone, I was wondering if after you took that short course of Prednisone, did your symptoms return quickly or did it last? Did it put you close to or in remission? I still haven't done it, but have a lot on hand from previous prescriptions. I was thinking about starting a 7 day course tomorrow. Does anyone else have advice on Prednisone tapers for LC?
I'm at the point now that whenever I eat, no matter what it is, I have have "episodes". I'm kind of desperate to gain control of this. Not kind of, I am desperate! I hope everyone is doing well.
05-26-2013, 07:15 PM   #342
sarad
 
Join Date: Apr 2013
Location: Cleveland, Ohio
Dear Rhyes,
I was diagnosed with LC in March, after months of W.D. and weight loss. My doc put me on Asacol, and I did an elimination diet after reading this site. I was much better after a month or so, but still had some D. so the doc put me on Entocort. Then I got stopped up! I tapered it down and off and am still not having W.D. after a few weeks. I am not able to eat dairy products, including all natural yogurt. Try to keep a food diary and figure out what you are able to eat. I am using Almond Milk, and eating plain meats and cooked vegetables, hard boiled eggs, tuna and chicken. I hope this is helpful and that you feel better soon.
05-27-2013, 06:56 AM   #343
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Sarad, Yes, that is very helpful. Thank you. I've been keeping a food diary for a week now. I'm still eating yogurt for lunch, so I guess I should cut that out. I to use almond milk and don't eat any other dairy besides the yogurt. For breakfast I usually have a rice cake with natural peanut butter and a banana. Right now I have yogurt and canned peaches or pears for lunch, and for dinner usually rice or mashed potatoes and a meat. I also eat metamucil wafers. I drink watered down fruit juice, and a tiny bit of soda, and of course lots of water. I've heard a lot about Entocort, however, I have no insurance (unfortunately) and can't afford it. I have read that I can order it from India, but I don't know if I can trust that. You apparently don't need a prescription. I have a lot of Prednisone on hand and was going to try a 7 day taper just to see if I can improve the symptoms. These past few months have been absolutely HORRIBLE.
It's so scary and overwhelming that one slip up on your diet can throw your life into a spiral! Thank you again for the advice. Any more advice would be greatly appreciated.
05-27-2013, 06:57 AM   #344
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Dingus, I read your post the other day and was just wondering how things are going for you.
05-27-2013, 07:10 PM   #345
Dingus
 
Join Date: May 2013
Things are going a little better, I did start taking Pepto I am at 6 a day. I made an appointment with my Local MD. I felt I needed to do that since I work in the same building as him. I said I was willing to try the Pepto as the Surgeon recommended. I also work in the same building as him.

However, I told my MD I am concerned about the body/joint pain, abdominal pain, weight lose, nausea, sores on my legs and canker sores as other symptoms I am having other than the diarrhea. He did feel the Pepto for three weeks then adding a fiber supplement will help with the diarrhea, nausea. He wanted a shot at this and if he couldn't help me he would refer me to a gastroenterologist. He wanted to first start me on a regimen of Prednisone 60mg x 7 days, 40mg x 4 days, 30mg x 4 days, 20mg x 4 days, 10mg x 4 days, 5 mg x 4 days then stop. He wanted to see if that would put my system in remission. He wanted me to start a food diary. He also ran some other labs for autoimmune disease. He changed my generic multivitamin to Alive women's 50+ it is a multi/mineral vitamin. At any time I am not feeling better or the side effects get to back I am to see him right away. This was the most time he has spent with me since this started.

I have no new itchy patches on my legs, the abdominal pain is not as bad today (however, this may just be one of my good days). I have the same achy body. I think I was just wanting that miracle drug to make it better NOW. I am not as exhausted today Thanks for asking, hope you are doing better.
05-27-2013, 07:49 PM   #346
sarad
 
Join Date: Apr 2013
Location: Cleveland, Ohio
Dingus, I just read your previous note. Coffee induced a lot of diarrhea for me at first. You might have less diarrhea if you cut out coffee for awhile. Once I got under better control I let myself have one cup of regular coffee and then a decaf later. I have a friend with microscopic colitis and she also cannot drink much coffee.
05-27-2013, 08:57 PM   #347
Dingus
 
Join Date: May 2013
I have had no caffeine, or dairy since March. I am mostly eating chicken, tuna, fish, jello, broth, rice, crackers.
05-28-2013, 07:05 AM   #348
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Dingus, if you don't mind, let me know how the Prednisone works for you. I have had it prescribed in the past, but was to worried about the side effects to take it. I still have them and was thinking about doing a short 7 day taper to see. I've had this "flare", if that's what I can call it, for years now. It has been absolutely horrible this entire year. It's honestly almost disabling for me. I haven't been eating much at all, lost about 20 pounds since December and feel weak, tired, lethargic, and I'm starting to get depressed from being so overwhelmed. My "episodes" seem to happen whether I eat or not. My belly can be fine one minute, then the next it's distended and I have to run to the bathroom, sometimes upwards of 30 times per day. It's watery with undigested food. I've also developed hemmeroids that actually stick out. Does anyone else have that problem? Gross I know, but who else to ask besides others who understand what this is like.
I'm at a total loss for what to do, so any advice at all is very helpful for me. I sure miss the days when I could eat anything and everything! I'm a 40 year old male, weigh about 100lb's and want so badly to gain some control over my life with this disease.
05-28-2013, 09:25 AM   #349
sarad
 
Join Date: Apr 2013
Location: Cleveland, Ohio
Rhyes, I feel so badly for you. That is how I felt before my diagnosis. Since the diagnosis, my gastroenterologist has been so supportive, putting me on Asacol and then the Entocort. I have osteoporosis and know that steroids are really bad to take when you have osteoporosis, but losing all of your nutrients due to diarrhea is most likely just as bad for you. I only had to take the steroids for a short time. Have you considered finding a free clinic that could assist you in getting the drugs from the drug company at no cost? Have you called the drug company and told them of your situation? Often they have a program where they will get the drugs for you at no cost if you fall within the income guidelines they set up. I suggest this b/c I volunteer at a free clinic and have seen how helpful the drug companies can be. I understand that the Entocort is specific for the gut and may be more helpful than prednisone. The other suggestion I have is something I learned about on this forum: the Specific Carbohydrate Diet. I bought the book and considered it, b/c they say that if you follow it for 1 year, it is possible to be cured of this disease. I am doing well now so I have put that on the back burner. If things get bad again, I may try it! It helped me just to read about it, because it gave me hope and ideas of foods to eat and to avoid. There is hope for us with this humiliating disease! Best wishes to you.
05-28-2013, 11:06 AM   #350
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Sarad, Thank you so much for the information. I haven't checked into a free clinic. Honestly, I didn't know there were any. Unfortunately, I have been unemployed for some time now, living on savings, which I'm running through and that scares me. I've stopped seeing my Gastro because of the cost. I also haven't checked with the drug companies, but will definitely take your advice and try these options. I'm scared to look for employment because of this. I don't see any employers understanding, accepting or tolerating this condition. I've been so stressed over it. I have a very good work ethic and want to work. If I could find a job that pays for work done, not necessarily a schedule, that would be my answer. Or, a night job, working alone. I often wonder how people have careers and deal with this. I've had digestive problems for over 10 years. I was diagnosed about 3 years ago, and it has just gotten progressively worse. The really odd thing is back in October of 2011, I went into spontaneous remission overnight. Everything was absolutely normal for about 15 days, then it went away, overnight. I still don't understand what that was. That is the only time in ten years that I haven't had watery d. Thank you again for the advice. I have heard that you can order Entocort from India without a prescription really cheap, but I don't know if I can trust that. I've pulled up some websites. Any ideas on that?
It really is so helpful talking to others with this. I don't think my family has a full understanding or appreciation for how bad it is. I didn't either before it happened to me.
05-28-2013, 03:25 PM   #351
sarad
 
Join Date: Apr 2013
Location: Cleveland, Ohio
I understand that these are autoimmune diseases and that they can come and go. I have other autoimmune diseases so this made sense to me. I totally understand what you are saying about trying to hold a job with this disease. In fact I think you may be eligible for Social Security disability. That being said, it is very hard to go through the process of getting SS disability. Try going to your local SS office to find out. My best advice is to go online to find the maker of Entocort. My Rx is a generic Budesonide ER made by Mylan. I am retired and am fortunate to have insurance. I do not know where you live, but many large cities have free clinics. I live in Cleveland Ohio, where the Cleveland Clinic has a charity care program. If you call your local hospital they may have one too. I wish you the best and hope you will get some help soon.
06-09-2013, 09:25 PM   #352
Dingus
 
Join Date: May 2013
Update on the prednisone. I am currently not having any Diarrhea, or abdominal cramping, no body aches. No new sores on my legs and the sores I had are healing. I am slowly eating more and more. Still no dairy. I Started the Prednisone on May 26th. I am now tapering down and will be at 20mg a day tomorrow. I have had a few side effects. A couple days I was a little dizzy and confused at 60mg but since tapering I have only had a couple days of heartburn and a slight headache. I had two days of energy which I put to good use since I have been so tired and not much got done. I hope it continues to go this smoothly.
06-10-2013, 07:00 AM   #353
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
That is good to hear Dingus. I still haven't started the Prednisone I have, and my symptoms are still horrible. I'm still losing weight and feel very weak. This news may force me to try the Prednisone. I don't know why I'm so worried about it as desperate as I am. I'm guess I'm hoping that my diet changes will help, but they haven't at all. I'm very happy for you though. If you don't mind, keep us informed at your progress. I was thinking about just trying a short burst of 7 or 10 days to see if that would help. What was your dosage and length of time?
I have felt so overwhelmed and depressed lately, I'm going to start taking Sam-e today to see if that will lift my mood. Hopefully!
06-10-2013, 10:23 AM   #354
Dingus
 
Join Date: May 2013
I am drinking citrocil every morning. Then he had me take 60mg Prednisone for 6 days, 40mg x 4 days, 30mg x 4 days, 20mg x 4 days, 10mg x 4 days, 5mg x 4 days. I am also taking a daily vitamin/mineral. At the same time I started walking a mile a day and I am at 2 miles a day just for my spirit and I think that has also helped. Staying positive as possible...Thinking about you and hope you find relief soon.
06-10-2013, 10:36 PM   #355
Liesia
 
Join Date: Oct 2012
Dingus I am so glad to hear that you are feeling better. Once you go off of the prednisone it is important to keep a good food diary or at least take not of what you are eating and and if you are having D or abdominal pain. I did start Cymbalta and it has helped me a lot with all of my body aches. I also get canker sores when my gut gets out of shape, kind of weird. It took me a while to figure out that, that was all connected. I have pretty much been in remission since starting the Cymbalta although I did have an issue when I had to go on anitibiotics for strep throat. I found that I could not have yogurt and I totally love greek yogurt but man it gave me such a gut ache. It is possible that the sores on you legs could have been caused by malnutrition. I am glad to hear they are doing better. Rhyes. I don't want to tell you what to do but Prednisone for small period of time could be very beneficial for you. Good luck and god bless to you all.
06-11-2013, 07:02 AM   #356
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Thanks Liesia and Dingus. I think I will start a short course of Prednisone. I'm glad I read your info about the greek yogurt, as I have been eating it every day for lunch. Yesterday was a really bad belly day. Not so much going to the bathroom a lot, in fact only 5 or 6 times, but horribly distended and painful all day. I feel so absolutey weak, it's actually getting difficult just to walk or do anything. I'm trying to exercise, as I've done my entire life, and I almost pass out when I do. Again, thank you for the advice. I need as much as possible, and your support helps.
06-26-2013, 06:28 PM   #357
tothetune
 
Join Date: Jan 2013
Location: gilbert, Arizona
I had watery diarrhea for 3 weeks, tests ruled out infectious causes, went to GI doc and had colonscopy last week. MD strongly suspected microscopic colitis. Lab report came back today, it was negative. Symptoms had resolved for the most part prior to biopsy, I'm wondering if the disease needs to be active to show up on biopsy. Also could have been simply missed. Now I'm looking to regain 10 lbs I lost.
I originally found this forum because my 16 yo son has Crohn's he continues to struggle with. I am 59 yo male. Great forum and my prayers to everyone.
06-27-2013, 05:19 AM   #358
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Hi tothetune, welcome to the board. There is a lot of helpful information here. As far as I know it doesn't have to be active. Did they do a biopsy during your colonoscopy? That is the only way they can tell if it's microscopic or Lymphocytic Colitis. I have had horrible watery diahhrea for several years. To Dingus and Lesheia, I finally made myself start the Prednisone last Sunday. I hate that I waited so long. It's only been five days and I'm feeling much better and this morning........ The first almost normal bowel movement I've had in YEARS! I'm not going to get too excited yet, but much improvement. Thanks for the advice. I was only going to do it for 7 days, but may extend it to 14. I hope everyone is doing well.
06-29-2013, 04:25 PM   #359
Jessica
Senior Member
 
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Join Date: Oct 2010
Location: North Port, Florida
Hey everyone. I know it's been awhile since I've posted in the forum. Recently, however, I've ran into a bit of success with my LC. It was more of a side effect, but let me try to explain this right.

Back story:
I was diagnosed with LC (onto of my Crohn's) last Sept/Oct. I was put on Entocort for a few weeks and it helped calm things down. Fast forward to Jan this year. I started training for a 5K. The benefits were notable, but nothing significant. Successfully competed a 5K in Feb and Mar. Then I had a bad week and took a bit of a hiatus from exercise (aside from some stationary bike use while watching movies). Until the last three weeks or so.

Fast forward:
About three weeks or so I started slowly working out again. Mostly weights, trying to slowly ease back into running (decent smoker, so it takes time getting my lungs used to it again). At the same time, I got an infection. Parotitis they called it. Ridiculously painful, and apparently I let it go too long. They gave me a heavy dose of an amoxicillin mixed antibiotic. 10 Days worth.

I was afraid it would upset my Crohn's, but I told them I would just stop if I had any doubts. Also, as an effort to ward off any female infectious complications (pc enough? lol), I started eating one to two yogurts a day. Mostly Greek, sometimes regular, but religiously. Also, I was taking one Imodium in the mornings. Just in case things started getting bad, call it preemptive.

Now, my LC had gotten bad recently. To the point my GI made it to my ToDo list. With Hubby and I trying to have a baby soon, I have been putting off the GI, in case he wanted steroids again. I was going to the bathroom half a dozen times a day, not one ounce of solidity, starting to lose weight again, and I has started this bleeding pattern that couldn't have been good.

On day 5 or 6 however, I woke to a startling surprise. All solid. Couldn't believe it. Although it was short lived, it was welcomed hope that was needed. So, I kept sound what I was doing. The all liquid slowly turned more and more solid. Here I am, a week or so off of the antibiotics. Still eating yogurt daily, although now it's at least two, sometimes three times a day. I'm on day two without Imodium. And I'm happy to say I'm a bit constipated. I ran two miles today without the usual discomfort. Although I still have some gas rumbles, I find its more because I'm reluctant to eat as I don't want to screw up whatever is going on.

I know that it might be presumptuous writing this post, as it hasn't been too long yet. However, I'm trying to stay optimistic about this bit of luck I seemingly ran into. This may have been a fix for me, so I'm not sure about everyone else. But I know these stories help one way or another at times.

Okay, that's long enough of a post. Love everyone here, and please stay strong. <3
__________________
Dx w/ Crohn's Disease May '08
Dx w/ Graves' Disease June '11
Dx w/ Lymphocytic Colitis October '12
06-30-2013, 05:56 AM   #360
Rhyes
 
Join Date: May 2013
Location: Pensacola, Florida
Thanks for the info. Jessica. I think that's interesting. I too eat two or three greek yogurts per day. I haven't had bad symptoms for about a week now with my LC, but I have been taking Prednisone. I stopped day before yesterday, however, because the side effects started getting me. I know people say not to eat dairy or gluten, but over the years (I've had LC for nearly ten years) no diet changes have ever improved my symptoms. At times it actually seems better when I do eat breads, yogurts, etc. Does anyone else have that experience? I do want to have a food sensitivity test done through this new holistic doctor I'm going to start seeing. Just for my comfort. Does anyone have experience with these tests? I hope everyone is doing well.
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