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Lymphocytic Colitis and Microscopic Colitis Club

Your reply brought tears to my eyes. It is a good feeling to know I am not alone. I wish none had to ever feel like this or go through the physical and emotional rotten feeling. I had been doing more reading on the web but stopped myself until after my appointment on Friday. It just keeps sinking me down and rather then crying my eyes out I see myself turning it inward and within minutes I am running to the closest bathroom.
Thank you again for sharing a bit of you with me. I was getting ready to put my application in at the local Adult Education to go back to school in July when I received the call and have not known what to do and after reading what you wrote I will be dropping it off tomorrow. 5 months is a long time and I guess it is something for me to look forward to as a goal to try and get better by then. At least well enough I can attend classes.
Hi Laurie,

I'm glad that that you're going to submit your application for further study...it's important that you focus on something positive, and put the condition aside, as far as possible.

At first I also scoured every website and researched all I could, but the enormity of what I was facing was too daunting, so decided to find out what I needed to know to cope with the here-and-now, and move on with my life. Every now and then when it flares up, I might research some more, but I don't let it consume me.

As with your further education, I've always had an interest in photography, and always wanted to persue this. A year ago I joined a Photographic Club, and have enjoyed learning more and meeting people. It's helped me move out of my comfort zone and LIVE...I was just existing before.

I hope you soon feel the same, and don't be discouraged at the down times... "He who has not looked on sorrow, will never know joy" [Kahlil Gibran] ...good times will follow :)

Lorraine
 
Lorraine,

With that depression, have you been tested for vitamin B12 and vitamin D deficiencies? And have you ever tried supplementing magnesium? All three of those can lead to depressive feelings. I don't ask about a magnesium test as it's pretty useless.

I strongly believe I was deficient in magnesium and supplementing it and getting more in my diet (and water supply) has made a HUGE difference for me.
Hi David,

My Vitamin B12 was 632,1 and Vitamin D was 4. I was prescribed Vitamin D tablets, and after four months Vit D is 16, and the GP has doubled my dose to try raise the levels quicker. I used to take a calcium & magnesium supplement years ago, but not recently.

After battling exhaustion for ever, have just been diagnosed with Hypothyroidism. Was on meds for this about 35yrs ago, then was stopped. Various tests over years have shown it as borderline until now, and am hoping getting this under control, will make life easier.

Thanks,
Lorraine
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Lorraine,

Magnesium is actually a cofactor for vitamin D. So taking both together may help in a variety of ways.

I'm a big fan of this brand of vitamin D as it contains the necessary cofactors that people with IBD so commonly lack.
 
Hi David,

I've just checked out that brand, and mine looks so insignificant by comparison...only 400iu per tab. Will check with my pharmacist if available in South Africa, or what could have similar composition. Thanks for the info :)

Lorraine
 
Thought as much...that's the GP. The PS/GI hasn't even prescribed it. A 26yr old colleague, who's into gym and healthy lifestyle, told me it was too low. Will definitely try source your recommendation, or a similar one here.

Thanks :)
 
Well I saw my gastro dr yesterday and he wants to try me on the pepto bismol treatment first. 8 per day for 8 weeks. I was also told I can safely take up to 5 immodium pills and if I am going out and will be eating to take 2 about 15 minutes before eating to slow things down. He said 75% of hi patients respond and achieve remmission this way so he wants to try it first. If that doesn't work then he will start me on what he uses for is UC patients. Thursday I was diagnosed with glaucoma and was started on drops, but the eye doctor does not want me on any kind of steroid therapy which I think may be the reason the gastro is trying what he is.
As to diet he said I should eat normal (what is normal? I live on soup). He said it will be rough and painful but he wants me to add back everything, slowly over time. I am deathly afraid to to be perfectly honest.
Does anyone know how this should be done, or any pointers on what I should add back to start with? I tried an egg yesterday and that was wrong... it nausiated me and made me run to the rest room really fast.
 
Hi Laurie,

Everything made me nauseaus at first, and sometimes still does. For a time I lived on about four lightly salted crackers a day, and lost a lot of weight! But also dehydrated. Now I take immodium if I'm going out to dinner, or if it's particularly bad, and it slows things down for a while. Otherwise been advised to avoid spicy food, and fried/fatty food, but otherwise just go with what I feel like.

I have days where it's manageable, and then days when it's not. Then I go back on dry crackers, which seem to work for me. I feel I'm eating something, but it's bland and doesn't nauseate me.

Best of luck :)
 
I think I have kind of started one yesterday. Painful day forcing myself to eat a meal (other then soup) even when I felt my stomach doing its gurgle routine. I am also cutting out anything with wheat and dairy since I have been reading that this all goes hand in hand. So far no change, but I know it will take more then a day and a half on the pepto routine and diet. I am going to adhere to how to precision routine how to do an elimination diet cutting out the rice and buckwheat too.
Hoping things start to look up soon.
 
Hi all. Just diagnosed with lymphocytic colitis after flare-up for last few months. Colonoscopy and biopsies confirmed. This flare-up has been my worst in years. Back track, 20 years old, diagnosed with "terminal ileitis", colitis but just localized. Put n steroids and meds and then like a young kid.... Didnt go back. I learned through diet to control symptoms, add vitamins, work out and I was ok. I would have flare-ups but I knew... Switch to broth, jello lime and orange, drink Gatorade. 2 weeks. Add white rice, inside of bread, bananas, boiled chicken, soft cooked carrots, 2 weeks, sandwiches, lean protein, avocado, hard cheese, soft pasta, eggs boiled then when I hit salmon I knew I could start to eat again.

Then this year, this flare-up was different. My belly is sore and huge after eating. Firm and bloated. Then burping, vomiting and well you know...

Tried diets. No dairy, no gluten, no meats, no oils and fats. All seperate and then all at the same time. Nothing works and Fast forward to now. Had to go to the hospital for dehydration and anti-diarrheal and anti nausea. Never have I thrown up so much plus 15x a day. My diet wasn't working. Colonoscopy and now LC on top. They put me on Asacol HD to try to calm me down. 3 days so far, little better, but not enough to think about leaving my well protected safe bathroom hang outs. Still taking big Prevacid, probiotics, vitamin e, multi vitamin and milk thistle.

I would like tips on diet for LC. Is anyone else dealing with both? I read the thread... Vitamin b and d seem important. That will help with my energy hopefully. Any tips would be great, and suggestions for what to ask my doctor in a month for my follow up. Thanks everyone..
 
I decided to d/c my Lialda on 1/31 to see just how much it was helping. Today has been a nightmare, and I am pretty sure there is some blood mixed in with the diarrhea.
 

David

Co-Founder
Staff member
Location
Naples, Florida
That sucks :( You poor thing.

If you have blood mixed in with your diarrhea, something more is going on than just microscopic colitis. Now, it may just be hemorrhoids but your GI needs to evaluate what's going on.
 
I was just reading someone else's thread about how she is coming to grips with the fact that she has a disease. Perhaps I'm in denial as well? Perhaps my doctor's nonchalantness about the whole situation makes me feel like it isn't that big of a deal. I know what I need to do. I have worked in healthcare my whole adult life. I have read up extensively on this subject, as well as all IBD's.

To a degree, it sort of pisses me off how many consider Humira or Remicade their wonder drug for UC/C, but this condition is largely ignored by medicine, and there is no real gold standard treatment. Hell, there is not even one drug that is prescribed on-label for this condition. It's so frustrating. I felt so good at first when I started my meds, then it was a downward slide and we added Carafate. That worked well, but then I got to thinking if that was helping so much, then the Lialda must not have been doing anything. We had added the Carafate because I couldn't differentiate if I was having LC sx's or if my issues were from lack of a gallbladder.

Today was my daughter's 10th birthday and I spent it in bed. Granted, I think she had a good day regardless, but it was not how I envisioned spending her Golden Birthday (10 on the 10th)...

Why???? Frustrated. Annoyed.

Rant over.
 
I just received a diagnosis finally. Lymphocytic Colitis. I guess I'm glad it has a name now. Funny thing is I ended up at this site long ago for something and now I'm back here for this. I guess I should have just set up here long ago.

Looking forward to feeling better!
 
Well, after reading many of these posts, my symptoms do not seem as severe. I was just diagnosed yesterday with Lymphocytic colitis

My main complain is the abdominal distension, God forbid I attempt to wear normal pants.

I see people have lost weight, I have gained, possibly because my diet is just horrid.

My first attempt in getting healthy is giving up all sweets once and for all. And from what I'm reading... dairy as well. How about yogurt? Is that relatively safe?
 
I am happy for you that you finally got a diagnosis. It is nice to know what your are dealing with. I had to give up yogurt. I used to eat it every day for breakfast and end up with bad abdominal in the afternoon. I have been having a hard time to find out what works and what does not. I have figured out that steak is hard on my stomach and that yogurt is hard. I really just keep hoping that this will go away. I have a couple of good days and then a couple of bad days and I really can not correlate it with food at all. Good luck and please keep sharing. It is nice to know what others have found works for them.
 
Thank you Liesia. This is going to be an interesting journey.

I would love to know what everyone symptoms are (as gross as some may be).
 
I was diagnosed with Lymphocytic colitis last week after 5 weeks of WD and weight loss. I was previously diagnosed with autoimmune disease of the pancreas (AIP), treated with 2 courses of steroids. I also have arthritis of the spine, neck and hands. I have been gluten free for almost a year for some unresolved RUQ pain following the steroid tx for AIP. I am taking Asacol and working on an elimination diet. So far, dairy is out. Thank goodness for Silk Almond Milk which I can tolerate very well. Note to David: I have had bouts of episcleritis over the years, which stopped after my rheumatologist started me on Plaquenil. Thanks for all of your advice/adventures. I wish you all the best.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Welcome to the community sarad. I'm sorry to hear of the struggles you've been experiencing :(

Have you had your vitamin D and magnesium levels tested? If so, what were they?
 
Thanks for asking. I have had Vitamin D tested in the past, and after supplementing, I got up to the normal range. I have not had it tested for about 2 years, though. I was taking magnesium prior to the onset of diarrhea, but stopped taking it b/c I thought it could be causing the diarrhea. Now I know that was not the cause of the diarrhea, but I still haven't resumed taking it and have never had my levels tested. Do you think I should start taking it again? I have a GI appointment late this month. I could ask him about it.
I seem to get diarrhea mostly about 15 minutes after eating (and then several more episodes about 5 minutes apart). Then I am ok until it is time to eat again. I wonder if this means that I am having the mast cell problem. I am planning to buy the D Hist. I have a lot of allergies to medications and have never understood why. I am a retired nurse and for years mixed up antibiotics to add to IV fluids (now that is done in the pharmacy). I have often wondered if I somehow inhaled some of the powder in the process and became allergic.
Your story really inspires me b/c you have improved so much! Thank you for sharing your story.
 
Hi everyone, I've been reading through this forum and decided to join, hopefuly for some help! I'm a 40 year old male. I was diagnosed with LC about 3 years ago after having symptoms for over 10 years. It has gotten progressively worse over the past 4 years or so. Now it absolutely controls my life. I have bouts of watery diahrea with undigested food, sometimes up to 15 or 20 times per day. I constantly feel weak, lethargic and extremely tired. I have been on several meds and tried several diets and nothing has really helped. Astonishingly, I've gone into total remission two times in ten years, but it only lasted for a weak or so. It happened overnight, and stopped just as quickly. I don't understand that at all. The last time was in October of 2011. I've always lived a very active lifestyle, but have had to slow down greatly. I've stopped running and now only use my eliptical machine. Even that is getting difficult.
I'm just so lost. I've stopped going to my GI because, unfortunately, I have no insurance and can't afford it. After seeing them for three years, they really couldn't help me. I've been on several meds. I'm not able to try the only thing I've heard works well, Enticort, because it is so expensive. I'm scared to try Prednisone from what I've heard. I was close to giving up, but recently decided to try a better diet again and high dose Pepto.
After having it this long, you would think I'm a veteran of it, but I still have no understanding of this disease and I'm having a hard time living with it. I need to re-enter my life after pretty much hiding for a year and a half, but don't know how, or if I even want to. I want so much to love life again. Any advise would be greatly appreciated. It's comforting to know that others are going through this as well. It's hard for friends and family to understand what I'm dealing with.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Rhyes and welcome to the community,

I'm sorry to hear of your struggles :( Have you read my holistic treatment thread?

My guess is your weakness and lethargy is coming from magnesium deficiency. There's no way you can have chronic diarrhea for that long and not be deficient. Supplementing magnesium was one of the biggest steps in my recovery.
 
Thanks for replying. I haven't read it in full yet, I just glanced at it now. I will read it in detail soon. It's a lot of information that I really want to absorb. I just have a few diet questions. I do drink coffee, which I plan on stopping. Is green or black tea a good alternative or is it the caffiene that's the problem? I also eat natural peanut butters, yogurt, fruit (usually canned in water), bananas, rice cakes, I just stopped breads (gluten), although in the past it really didn't seem to change anything. I've just started drinking fruit juices (from concentrate like Welches grape no sugar or pres. added). Are carbonated beverages bad? I've been eating frozen veggies, cooked well until soft, brussel sprouts, cauliflower, peas, carrots, etc. I eat canned tuna and frozen fish (salmon, talapia, sometimes shrimp). On accasion I eat red meat. I also drink a protien supplement (Whey).
My usual daily diet it Breakfast: Rice cake with PB and Banana. Lunch: Bowl of yogurt with canned fruit. Dinner is usually a meat, rice cake, and a veggie. I don't run anymore, but use my eliptical machine and I lift weights.
Also, I have had a horrible external hemmeroid for a while now. It only protrudes when my belly is bad, so I don't think it's the lifting which I've done all my life.
The odd thing is generally my belly is bad in the mornings with several trips the the bathroom. In the afternoon my belly is fine, not distended or sense of urgency at all. In the evening it starts getting distended again. I usually have "episodes" early in the mornings, and afternoons.
I'm sorry about all of the questions and info. There is so much that confuses me about this I'm just pouring it all out.
Thank you again David for responding. I will read your thread in the next day or so.
Oh, I don't take magnesium currently, or Vitamin D. In the morning I take a multi vitamin, Vitamin E, B-50 complex, Vitamin C, and Glucosamine with MSM, or just MSM. I'm thinking about changing that to Sam-e. I understand that it helps like MSM, but also with depression.
 
Hello Rhyes, sorry to hear you are having such a hard time. I wanted to let you know that I have done prednisone a couple of times, it is a much cheaper medication and I did a 2 1/2 week tapered dose. What that means is you start high for about 4 days then taper it off until you are not taking it any more. Both times it helped me out a lot, it at least got me to the point that now when I take pepto it works. I did not have any side effects. You could try the tapered dosing first to see how that works and the med is cheap. Prednisone is not a med I would want to be on for a long time but for a short burst it works great. I also take a b complex vit, and Vit d. I currently am on asacol, It works ok but has not put me into remission. I also started an antidepressent which has helped with the pain a lot. The pain is not completely gone all of the time but I think I can deal with it much better. I had to stop eating yogurt, I found that with in an hour I would have lots of stomach cramping. I love greek yogurt too, so kind of a bummer. Good luck, I hope that you can find what works for you.
 
Liesia, Thank you for the info. I actually have Prednisone at home that was prescribed to me before. I was just scared to take it. What was your miligrams for the two week taper? I may try that. I'm fairly desperate. You didn't have any side affects at all? No weight gain, sleeplessness, anything? If it's just two weeks, I would be willing. Thank you again. You and David have already been helpful today. I'm glad I joined this forum.
 
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.
 
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.
 
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?
 
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!)
 
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?
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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!
 
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.
 
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.
 
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.
 
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.
 
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.
 
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
 
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.
 
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
 
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 :(
 
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!
 
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?
 
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?
 
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:)
 

David

Co-Founder
Staff member
Location
Naples, Florida
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.
 
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.
 
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.
 
I hope your new plan works for you. No coffee sound like the hardest. I'm.not quite there yet. Good luck. :beerchug:
 
I hope your new plan works for you. No coffee sound like the hardest. I'm.not quite there yet. Good luck. :beerchug:
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.
 
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
 
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
 
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...
 
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...
 
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
 
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
 
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.
 
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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
 
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. :ybatty: 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 :eek: ) 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
 
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.:yfaint:
 
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.:yfaint:
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. :ymad: 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. :lol2:

One question though - did you get any VA disability for the MC? Thanks in advance for any words of wisdom, and thanks for responding!
 
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.
 
Saga continues

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.
 
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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
 
Hi all - figured I'd pop in for an update. The budesonide taper worked like a charm for me! Until I stopped taking it. :ymad: Had a follow up with my GI doc last week, and she ran tests to check for other autoimmune disorders and gave me a new prescription for more budesinide - a longer taper this time. 9mg/day for 6 weeks, 6mg/day for 6 weeks, 3mg/day for 6 weeks, 3mg/every other day for 6 weeks, then 3mg/every 3 days for 6 weeks. And if at any time symptoms start to come back, to step back up to the last successful dosage. Ugh. Not terribly excited to be on a corticosteroid for a year, but I guess it's better than dealing with the LC. It was sooooo nice to feel like a normal human all summer when I was taking it. I had energy, no sprinting to the bathroom, no horrific pains - it was awesome! Can't wait to feel good again in a week or two when the drugs kick in. :) Also keeping my fingers crossed that my blood work all comes back clear - she seemed to think that since I have LC that it's very likely I have another undiagnosed autoimmune disease. Here's hoping the LC is all I have - because heaven knows that's enough!
 
Budesonide is back. This time my GI is having me do 4 months at 9mg, then 6mg for a month, then 3mg for a month. I think I might go for a longer taper like SamIAm is doing. It sounds better than just stoping cold turkey at 3mg. It is to bad a person could not just keep taking 9mg for a maintenance drug. Oh well. We can just keep trying. Maybe someday someone will find something better.
 
Hi everyone. I was just diagnosed with LC last week and found this forum while looking into its effects on my Navy career. I have alot of other stuff going on and the doctors don't know if everything is connected or not. I was in the hospital 3 times over the summer (third was for D) and am currently seeing many specialists. They are currently looking at/diagnosed me with: metabolic acidosis, interstitial nephritis, hypogammaglobulinemia, LC, elevated live enzymes, acid reflux, low testoerone, hypertension, significant fatigue, weight loss (25lbs in about 2 months and still dropping) chronic sinusitis, obstructive sleep disorder (just below apnea, getting retested soon) and a lot more head scratching. I have had D 3-15x/day for over 3 months now. My first colonoscopy showed signs on Crohn's or Celiacs with negative biopsies (celiac blood test was negative too) but the second one looked clear. The biopsies from the second are what showed LC. I have read and seen that I could still have Crohn's or celiacs even those my second scope was clear. Is this true? I have also seen connections between LC and CVID. I am currently prescibed the pepto treatment but it has done nothing so far. Does anyone know if LC is something I will get medically discharged for? With my job I can't stay in if I am non-deployable and I will lose my job code if I don't get to a ship by next October (civilian docs want me to stick around for a year at this point). I am sorry that this is a ramble but I just don't know how to get all the info I want out in a clear way
 
Budesonide is back. This time my GI is having me do 4 months at 9mg, then 6mg for a month, then 3mg for a month. I think I might go for a longer taper like SamIAm is doing. It sounds better than just stoping cold turkey at 3mg. It is to bad a person could not just keep taking 9mg for a maintenance drug. Oh well. We can just keep trying. Maybe someday someone will find something better.
I am on entocort too but my doctor has said nothing about only being on it for a short time. Is it a short-term treatment? As soon as I skip a daily dose, my diarrhea is back full force.
 
I am 15 and was diagnosed with Lymphocytic Colitis about 6 months ago.

I go through extreme stabbing pain in my intestines every day, several times usually. Sometimes it lasts a full day, other times only a few minutes. It is completely unpredictable and impossible to find a pattern. I am taking Lialda and I just got off Uceris. I also have extreme heartburn so I take Prilosec (I think that's how you spell it...) I also am extremely dizzy everyday and am very nauseous every time I consume anything and have a throat problem where it hurts to swallow anything. I also am unable to smell anything.

Has anyone ever heard of someone as young as me having all of this? I have no idea if any of it is connected but the whole thing is getting very frustrating. It is getting slightly better, but I am going back to school soon and it is very difficult to get through school (expecting high A's) with extreme pain all day. I missed four months of school this past year because of this pain, and I am repeating the grade this coming up year. I just hope I don't have to repeat it for a 3rd time.
 
I am 15 and was diagnosed with Lymphocytic Colitis about 6 months ago.

I go through extreme stabbing pain in my intestines every day, several times usually. Sometimes it lasts a full day, other times only a few minutes. It is completely unpredictable and impossible to find a pattern. I am taking Lialda and I just got off Uceris. I also have extreme heartburn so I take Prilosec (I think that's how you spell it...) I also am extremely dizzy everyday and am very nauseous every time I consume anything and have a throat problem where it hurts to swallow anything. I also am unable to smell anything.

Has anyone ever heard of someone as young as me having all of this? I have no idea if any of it is connected but the whole thing is getting very frustrating. It is getting slightly better, but I am going back to school soon and it is very difficult to get through school (expecting high A's) with extreme pain all day. I missed four months of school this past year because of this pain, and I am repeating the grade this coming up year. I just hope I don't have to repeat it for a 3rd time.
Do you have a gastroenterologist or are you using just a primary care doctor to treat all your issues?
 
Hi everyone. I had posted on the my story forum but figured I'd update here. My GI doctor told me I was a "special case" because he had never seen someone with Lymphocytic Colitis in the stomach, and colon/intestines out of all the years he's been a GI doctor. They had me on Uceris but I was not getting any better on that so he switched me to Prednisone 40mg since last Saturday. I don't want to get ahead of myself but I already feel so much better than before. I'm not back to 100% again but I am getting there.

Being an already overweight female, losing weight through this actually hasn't been THAT bad of a thing for me. Now that I am feeling better I would like to get back to the gym and working out again. Are there any suggestions as to what I should do in the gym that won't set me back again? I don't want to go and then cause myself anymore problems. I figured I would wait until this coming weekend so I have work off for 2 days after just in case. Normally I do a warm up on the stationary bike, then do abs, and switch days between legs and arms and end the day with a fast walk on the treadmill.

Also does anyone with Lymphocytic colitis ever get a rash? I've had a skin rash for sometime now and once I started taking the prednisone and feeling better, the rash doesn't seem as itchy anymore?
 
Looking for anyone who knows about Lymphocytic colitis. I have a lot of random pains in my body does anyone else have this sort of problem? I had come across something that mentioned pains in legs and joints but can't find anything more about it.
 
Looking for anyone who knows about Lymphocytic colitis. I have a lot of random pains in my body does anyone else have this sort of problem? I had come across something that mentioned pains in legs and joints but can't find anything more about it.

Hi, I was just diagnosed with lymphocytic in Sept. I do get achy joints sometimes but as yet I don't know if the cause is the LC or something else. I also get a lot of fatigue and aching muscles which I believe is connected to the LC.
 
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