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05-21-2011, 06:45 PM   #1
David
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Lymphocytic Colitis and Microscopic Colitis Club

This thread is for those of us diagnosed with or suspected of having Microscopic Colitis AKA Lymphocytic Colitis or Collagenous Colitis.

I will slowly update this first post about each form of Colitis so that it can be information to anyone reading it. In the meantime, welcome to the club. You can PM me for the secret handshake.

Microscopic Colitis

Microscopic colitis refers to two inflammatory medical conditions: Collagenous Colitis and Lymphocytic Colitis, both of which are outlined below. Please note that some patients exhibit signs of both LC and CC at different points of their disease suggesting to some researchers that the diseases are the same just at different stages.

Lymphocytic Colitis

Lymphocytic colitis is a subtype of microscopic colitis and is thought to be a rare condition characterized by lymphocytes in the epithelium and surrounding connective tissue. Symptoms include chronic diarrhea (96% of cases), abdominal pain (47%), and weight loss (41%).[1] In addition, the rarity of this disease is in question as more colonoscopy's with biopsies are performed (which is the only way to diagnose it). Lympocytic Colitis has about the same incidence rate is both sexes. The excessive intraepithelial lymphocytes observed in LC are predominantly CD4+ T cells rather than CD8+.

Collagenous Colitis

Collagenous Colitis is also a subtype of Microscopic Colitis and some experts feel it is the same thing as Lymphocytic Colitis. The only real difference between the two is Collagenous Colitis shows a thickening of the subepithelial collagen table which is the connective tissue between colonic glands. CC has a higher incidence rate in women.

Causes

The cause of these forms of Colitis are not known. There are theories that suggest long term use of NSAIDs such as motrin and aleve may play a part as well and anti anxiety as anti depression medications in the SSRI family.

Comorbid Issues

It has been found that many people with preexisting autoimmune conditions, such as celiac sprue, psoriasis and rheumatoid arthritis, are later diagnosed with microscopic colitis. Patients diagnosed with LC also have had uveitis, idiopathic pulmonary fibrosis, juvenile diabetes mellitus, pernicious anemia, autoimmune thyroid disease, and idiopathic thrombocytopenic purpura.

Those with Celiac Disease have a greatly increased chance of having microscopic Colitis. Anyone diagnosed with Celiac Disease should be tested for Microscopic Colitis and vice versa.

Diagnosis

The most effective way to diagnose Lymphocytic Colitis or Collagenous Colitis is via a colonoscopy where biopsies are taken. While 95% of patients with MC will have positive left colon biopsies, the rectosigmoid and right side of the colon should also be biopsied

Treatment

Step one is avoiding any aggravating drugs such as NSAIDs (Advil, Aleve, Motrin, etc). Long term use of Pepto Bismol (1-2 months) at 8 tablets per day has been shown to be affective in treating some patients with CC and LC.

Prescription Medications

Budesonide (Entocort), 6-MP and Prednisone have been shown to be effective in treating LC and CC.

Supplements

- David Chapman reports definitively positive results with this supplement.

Dietary Recommendations

Dietary recommendations are varied but they CAN be beneficial. Improvement has been seen with the Specific Carbohydrate Diet. You may want to try various diets (stick with them for at least 3 months), keeping a food journal, and seeing what works for you and what does not.

Fitness Recommendations

High impact forms of fitness can cause additional pain and symptoms for many. But fitness is extremely important. Yoga, swimming, and bike riding are all low impact exercises that can be highly beneficial.

References

[pos]1a[/pos]- [1] http://gut.bmj.com/content/53/4/536.full

- Miehlke S, Madisch A, Karimi D, et al. Budesonide is effective in treating lymphocytic colitis: a randomized double-blind placebo-controlled study. Gastroenterology. Jun 2009;136(7):2092-100. [Medline].

- Baert F, Wouters K, D'Haens G, Hoang P, Naegels S, D'Heygere F, et al. Lymphocytic colitis: a distinct clinical entity? A clinicopathological confrontation of lymphocytic and collagenous colitis. Gut. Sep 1999;45(3):375-81. [Medline]

- Chande N, MacDonald JK, McDonald JW. Interventions for treating microscopic colitis: a Cochrane Inflammatory Bowel Disease and Functional Bowel Disorders Review Group systematic review of randomized trials. Am J Gastroenterol. Jan 2009;104(1):235-41; quiz 234, 242. [Medline]

- http://www.gastrojournal.org/article...132-6/fulltext

- http://www.medscape.com/viewarticle/743426 - Celiac Disease and Microscopic Colitis
05-21-2011, 07:17 PM   #2
David
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My journey with Lymphocytic Colitis has not been a fun one and yet I'm at the point that I'm glad it's a journey I was chosen to undertake. About 11 months ago I found myself sitting in the Hilo, Hawaii airport waiting to fly back to the mainland. I had spent the last year logging and farming in the deep jungles of the Big Island of Hawaii in rather 3rd world conditions. I lived in a 12x12 cabin, mud was a daily part of my life, and for much of that time I would crap in the woods and bathe out of a bucket. I loved it though and I was in GREAT shape. 190 lbs of logging and farming muscle.

As I sat in the airport terminal, I felt a pain in my lower right abdomen. "Oh crap, this will suck if I get on this plane for 6 hours and have an appendicitis" I thought to myself. And thus began the 5 month journey to simply get diagnosed. Tons of blood tests, xrays, three CT scans, fingers up my butt, you name it. It wasn't until I demanded a colonoscopy from my GI who was convinced that I had IBS did the biopsy come back as Chronic Lymphocytic Colitis.

My body has not been happy with me these 11 months. In addition to the abdominal pain that spread throughout my large intestine, I spent 5 weeks coughing up blood, had many bouts of flu/colds, and continue to have a wicked case of costochondritis. This has easily been the hardest year of my life. At my lowest, I hit 165lbs and was a shell of my former self.

As I sit here typing this 11 months later, I am actually feeling REALLY good. I am at 180lbs, my pain is negligible, and I'm feeling stronger and more alive each day. All of this despite not taking a single prescribed drug. How have I done it? I've attacked my Lymphocytic Colitis from all angles. I've tried all kinds of diets and just about every supplement you can think of. What's working for me now:

1. Yoga - I have developed a very specific yoga routine for myself. I theorize that a lot of the trouble is actually physical in nature. If the body is healthy, it is able to deal with issues itself. But when there are structural weaknesses or tension, then the body isn't able to function at peak efficiency. Think of it as a kinked garden hose. Our body is full of garden hoses that allow for proper circulation, elimination, etc. If you have injuries, weakness, or tension, then your hoses get kinked and the water gets stagnant.

2. Meditation and pranayama (special breathing techniques) with the aim of dealing with emotional issues - we hold emotion in our bodies as deep chronic tension. If anyone doesn't believe this or understand why, I'll be happy to elaborate. If there is deep chronic tension due to unresolved emotional issues from the past, then your hoses get kinked as I alluded to above.

3. Diet - I eat a VERY strict diet. It is mostly salad and fish. I have begun adding in some breads and turkey now that I'm feeling better.

4. Supplements - I've tried SO MANY supplements. The only one that seemed to make a big difference was D-Hist which contains Bromelain which I think is my big savior. It is the only supplement I currently take.

I'm not going to say I'm cured or even in remission yet. But I am feeling the best I've felt in 11 months and I'm praying the slope continues to be an upward one.
05-21-2011, 07:26 PM   #3
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Thanks David.
05-22-2011, 06:24 PM   #4
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Wow. Thanks David for sharing your story, and I'm glad to hear you are on the road to recovery!
Costochondritis is nothing less than wicked isn't it !??! Do you have any "tricks" up your sleeve for getting through a flare of that ? I've been struggling with it for around 11 years now off and on. I use prescription Voltaren gel, but it doesn't seem to help much. I've never been able to figure out what "triggers" it, except a cold/flu, but those aren't the only factors or it would be a cinch!

Best of luck to you getting to remission for your LC
And thanks for all you do for this forum!
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05-22-2011, 07:01 PM   #5
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Hi Tracy,

Unfortunately, I have not figured out any tricks for the costochondritis like I have for the LC. I'm sure exploring though. I HAVE taken prescription meds for it though as dealing with the pain of LC and CC was just too much. My doctor prescribed me Celebrex which doesn't seem to upset my gut but helps with CC a LOT.

And thank you for your kind words

*hugs*
05-22-2011, 10:14 PM   #6
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Some days i feel better than others, is there any chance that the LC will just go away? Just stop, a lot of the posts i read on this forum the LC seems to be there for years, is that what I have to look forward to?

I know its probably silly but I want a quick fix, i just want this to stop.
05-22-2011, 11:25 PM   #7
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Based upon the research I have done, some people do indeed become cured of their LC. For others, it is a lifetime of struggle.

I can only speak for myself, but I get the feeling that LC is a sign for us to take a step back and evaluate our lives, who we are, and how we conduct ourselves. I don't think there is a quick fix, but through tremendous amount of introspection and lifestyle changes, I feel I WILL be cured. I have learned so much about myself and been so humbled over the last year. How else could I have learned so much? I have much yet to learn from my LC. I feel that once I don't have anything else to learn, then I will no longer have LC.
05-23-2011, 12:08 AM   #8
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Got to admit i havent looked at it quite like that. Something to think about though. I suppose its deal with it or not. Christ it is depressing though.
05-23-2011, 09:59 AM   #9
David
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Christ it is depressing though.
For sure. It took me about 10 months to start to look at it like that. If memory serves, you are a lot like I was. A strong, athletic person who could do seemingly anything on a physical level. LC sure changes that, at least it did for me. I've ALWAYS been strong and LC made me feel like I was 80 years old inside. Depressing indeed!
05-23-2011, 11:32 AM   #10
Cat-a-Tonic
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Hi David, I was perusing this thread because my GI feels that I could have either Crohn's or microscopic colitis (since all my tests have come back normal but I respond to pred & Entocort, the thought is that either I have Crohn's and it's hiding really well, or I have microscopic colitis that was missed on biopsy - there was a thread in the books & research part of the forum about how microscopic colitis responds well to Entocort, even though Ento is currently only approved for use in Crohn's - so what I've got could be either).

Anyway, I hadn't heard of costochondritis so I did some googling. I think I might have that too! I get sharp pain in my left ribcage area every so often. It hurts to take a deep breath and it hurts to fully exhale too. Do you get those type of symptoms with CC? I always assumed my chest pain was related to my acid reflux, like maybe I was aspirating some acid into my left lung or something like that. So I will be asking my GP about costochondritis at my next appointment. Thanks!
05-23-2011, 11:43 AM   #11
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Hi Cat...

CC can feel like what you are describing. It is an inflammation of the tissues surrounding your rib cage/chest wall. With my case it is usually confined to my sternum area. I don't know how Davids presented, but the first time mine did it literally felt like I was having a heart attack! And come to find out, the doctors say it is the closest thing you can have to knowing what it feels like to have a heart attack, with out actually having one. Now when the CC flairs it is nothing as close in pain as the first attack, but still very painful. It does make you "feel" like you can't breath correctly, but that is due to the inflammation around your lungs and does not actually affect your air flow. In my case, there is no mistaking when the CC is flaring...now that I know what it is, it is very distinct.

Hope this helps a little...even though you didn't ask me
Best of luck to you!
05-23-2011, 12:01 PM   #12
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Hi Crohn's mom, thanks for the info! My rib cage pain is usually on the far left, like a few inches below my left armpit. Your post makes it sound like it usually manifests in the sternum/central chest area. Do you know if CC can occur on the far left side of the chest? I don't really get what feels like heart attack pain, I get what feels like a cracked rib or something painful in my lung. But it comes and goes so I don't think I have a cracked rib. I've never been able to determine for sure whether the pain is coming from my lung or my ribs.
05-23-2011, 12:07 PM   #13
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yes, it can occur over there. It can occur anywhere around the rib cage, sternum, chest wall, etc. If you have CC, and it is only confined to that one spot, then consider yourself very lucky! There really won't be anything your doctor can do about it though if that is what he determines it to be. He will say something about anti-inflammatories blah, blah...and in your case and lack of diagnosis for CD then you already know to not take those The only thing that ever helps mine is a cortisone shot straight into the sternum OUCH. So, like I said, if that is it with you sweetie...be happy!
05-23-2011, 12:14 PM   #14
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My goodness! I'm sorry to here there isn't anything they can do for you besides give you a painful shot. In that case, I'm glad mine is just on the left! I find that I can't sleep on my left side when the pain is bad, but I can sleep just fine on my right, so I will be happy about that and glad I don't have to have a painful shot.

I wonder if prednisone would help? Pred helps my guts when I flare, although my GI isn't keen about putting an undiagnosed person on pred. Maybe if pred was doing dual duty on both guts and ribs, he'd be more comfortable with prescribing it for me. Hmm, something to think about anyway. Thanks again for the info!
05-23-2011, 12:47 PM   #15
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Hiya Cat
Anyway, I hadn't heard of costochondritis so I did some googling. I think I might have that too! I get sharp pain in my left ribcage area every so often. It hurts to take a deep breath and it hurts to fully exhale too. Do you get those type of symptoms with CC?
In addition to what was stated above, one of the hallmarks of constochondritis is palpable pain. The doctor will press on your sternum (or area of pain) and if THAT hurts, it is likely constochondritis. I was diagnosed by my pulmonologist.

My pain is at its worst when I bend over for any duration or perform any sort of jarring motion like trying to dig with a shovel. I think everyone's symptoms are a bit different though. At my worst when it first started, it hurt just to breathe.
05-23-2011, 12:52 PM   #16
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Oh David you are SO SO SO right ! Nobody better lay a finger on my sternum ever again...they just may loose a finger ! LOL
05-24-2011, 11:00 PM   #17
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Peter, by chance, have you had a vasectomy?
05-25-2011, 02:45 PM   #18
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I think I jinxed myself talking about CC in here ! YIKES !
I've been trying all day to talk the elephant down off of my chest, but he's refusing to budge! It even hurts to type this now! GEEZ

Rant over....sorry for highjacking David
06-04-2011, 04:40 PM   #19
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I realized that my 1 year anniversary of the pain starting was a couple days ago.

It has been a LONG year...
06-04-2011, 09:45 PM   #20
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David, I know the feeling! I'm still undiagnosed. It'll be 2 years for me on Oct 9th, and 2 verrrrrrry long years at that. I really hope to have a diagnosis before then but I'm not holding my breath.
06-05-2011, 12:57 AM   #21
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It's truly a shame when we are forced to remember anniversaries this way
06-10-2011, 08:48 PM   #22
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Hello! I have been researching this as I have been having symptoms for over a month. I have intermittent diarrhea, cramping, I had blood in my stools that was explained by hemorrhoids and recently started suffering from joint pain. I was researching this and it sounds that joint pain can be a bodies reaction to the disease as it is an autoimmune disease. I am just wondering if anyone can give me some pointers because I want to bring this up to my GI when I go in and the internet does not have all that much info and some of it is conflicting (joint pain facts especially) I had a colonscopy and he said that everything looked fine but did take random biopsy's. My GI keeps telling me its IBS but I know its not and I want to make sure that they are not missing anything more serious. Any feedback will be greatly appreciated : )
06-11-2011, 02:42 PM   #23
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Hello Dayz,

Bloody D isn't a normal symptom of either form of Microscopic Colitis unless it was from the hemorrhoids. And if you had a colonoscopy with biopsy, that's how it would have been found. Is it still possible you have it? Sure, but the probability is probably pretty low as it would mean that they missed any of the areas that have the lymphocytes when doing the biopsy.

I'm sorry you're having so much trouble I hope they're able to get to the bottom of it soon. I wish you well.
06-11-2011, 02:50 PM   #24
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Yeah I had some biopsy's taken but I haven't received the results yet. I feel better today as far as joint pain and my stomach doesn't hurt but I still need to find out whats going on. Thank your for your reply : )
06-11-2011, 02:52 PM   #25
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Oh, I thought you had the results back, my apologies! I hope they come back normal Good luck!
06-11-2011, 08:05 PM   #26
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David, I'm wondering what the odds are that biopsies would miss all the areas of microscopic colitis. I know it has a skip pattern like CD does. My GI has said that I might have microscopic colitis (I respond well to Entocort, which apparently works well for both Crohn's and microscopic colitis). But when I had my colonoscopy in April 2010, he took maybe 10 or 12 biopsies and all came back normal. So I'm wondering realistically what the odds are that the biopsies would have missed microscopic colitis. It makes sense to me that I could have it because none of my other tests have found anything either - pill cam, CT scan, etc were all normal.
06-11-2011, 08:08 PM   #27
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That's a good question Cat, I don't know. I'm not sure how many biopsies my doctor took or even specifically where, so I'm no help in that regard, either.

Where did you learn it has a skip pattern? I didn't know that. Makes sense though since my primary pain is in two different spots.
06-13-2011, 09:43 AM   #28
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David, my GI had told me that microscopic colitis has a skip pattern. Since you asked, I did some googling just now to be sure, and I found a link from Mayo Clinic confirming that. (See last paragraph - last sentence)

http://www.mayoclinic.org/microscopi...diagnosis.html

My pain appears in several spots as well. My "main" pain is in the LRQ, but I do sometimes get pain in the lower left as well. And since getting gastritis a few months ago, I now sometimes also get mid-abdomen central pain where my stomach is. For a little while I assumed that, since I respond well to Entocort, I must have CD - but then somebody posted an article on the forum about how studies have shown that microscopic colitis patients also respond really well to Entocort. So I have one or the other - microscopic colitis would make sense because all my test results, including pill cam, look totally normal.

In my googling just now I saw an article that had a paragraph about how they think that microscopic colitis may be triggered in people with genetics for it, who take too many NSAIDs. I was definitely guilty of that before I became ill - first got ill in Oct 2009, and the entire summer of 09 hubby and I went kayaking most weekends, and I popped ibuprofen like candy to help with the muscle aches. I hate to think that I may have been able to prevent this in some way if I had just taken tylenol instead (although my liver is messed up too so I guess either way I would have screwed myself!).
06-23-2011, 12:15 AM   #29
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Cat-a-tonic - during your colonoscopy I realize biopsies were taken. Were they stained for mast cells? Clicky here. Thought of you as I read about this. And related reading for ya.
06-23-2011, 01:46 PM   #30
Stancheski
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This thread was the reason I joined this Forum.

Thanks David!
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