Lymphocytic Colitis and Microscopic Colitis Club

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David

David

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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%).[goto=1a][1][/goto] 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 [wiki]Specific Carbohydrate Diet[/wiki]. 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/S0016-5085(11)00132-6/fulltext

- http://www.medscape.com/viewarticle/743426 - Celiac Disease and Microscopic Colitis
 
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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.
 
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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!
 
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*
 
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.
 
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.
 
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.
 
PeterG said:
Christ it is depressing though.
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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!
 
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!
 
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 :lol:
Best of luck to you! :)
 
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.
 
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! :lol:
 
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! :)
 
Hiya Cat :)
Cat-a-Tonic said:
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?
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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.
 
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
 
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 :voodoo:

Rant over....sorry for highjacking David :yfaint:
 
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.
 
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 : )
 
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.
 
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 : )
 
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.
 
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.
 
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/microscopic-colitis/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!).
 
I've added some new information to the original post.

Personal update:

1. I've been on a strict vegan diet for about 1 month now. I would say that it has been beneficial. I'm going to stick to it for 3 months for a thorough evaluation.

2. In my research, I have found that Bismuth subsalicylate (Pepto Bismol) not only reduces D, but has anti inflammatory properties and many people have had success with it and LC / CC. I'm going to take a high dose for one month as a test since it is a very benign compound with no real negative side effects.

3. Tracy, if you're still following along, I've recently had "Prolotherapy" for my costochondritis. I'll let you know how it goes.
 
I am glad your vegan diet seems to be helping. Please keep us posted.

Yes, I have read Pepto is beneficial for those with LC/CC. I hope it helps!
 
David,
Sorry but could you please explain Chronic Lymphocytis Colitis? I have RA at 21, Crohn's at 31, Sjorngrens at 55 and now Lupus. I have seen many doctors and of course completed alot of research but I have never came across your problem. I presume its auto immune?

BTW....you have created a great site. What prompted you to start it?
Thanks, Diane
 
Hi Diane,

I moved your post here so we could let the "Your Story" thread you posted it in be all about that person. Don't worry, you did nothing wrong! :)

The first post of this thread will hopefully answer your question as to what LC is. As for starting this site, all the credit goes to my fellow admin Mike Yarmo who had the idea for this forum. I was simply the tech guy/silent partner and didn't take an active role until I happened to start to have bad abdominal issues which ended up being diagnosed as Lymphocytic Colitis.
 
This article is a pretty darn comprehensive look at microscopic colitis from the American Gastroenterology Association (AGA).

It's well worth the read, but a few highlights in case you don't have time:

- The overall incidence of microscopic colitis (collagenous and lymphocytic) appears to have increased substantially in recent years. In a US study covering the period from 1985 to 2001, the incidence of microscopic colitis increased from 1.1 per 100,000 person-years early in the study to 19.6 per 100,000 person-years at the end.

- A variety of mechanisms have been proposed to cause diarrhea in patients with microscopic colitis. The severity of diarrhea appears to be related to the intensity of the inflammatory response, as opposed to the thickness of the subepithelial collagen band, indicating that the diarrhea is predominantly inflammatory in origin

- 40% of patients have an autoimmune disease such as celiac disease, thyroiditis, type 1 diabetes mellitus, or rheumatoid arthritis

- A variety of luminal factors have been implicated in the pathogenesis of microscopic colitis, including dietary antigens, drugs, bile salts, and bacterial products and toxins. The observation that histologic features associated with microscopic colitis resolve if the fecal stream is diverted by ileostomy indicates the role of luminal factors

- The case for a cause-and-effect relationship between NSAID use and microscopic colitis was strengthened by reports of clinical and histologic improvement among NSAID users when the medication was discontinued.59, 62, 65, 66 In the controlled study of 31 patients with collagenous colitis described previously, 3 subjects reported reduced diarrhea after they stopped taking NSAIDs. One subject, who later resumed taking an NSAID, developed recurrent diarrhea that resolved when the NSAID was again discontinued.59 Thus, sustained use of NSAIDs can predispose to or exacerbate microscopic colitis; patients should be advised to discontinue NSAIDs once this diagnosis is made.

- In summary, several potential mechanisms have been proposed to explain the pathophysiology of microscopic colitis, although no dominant mechanism has emerged. It seems that the clinical and histologic entity referred to as “microscopic colitis” is caused by more than one mechanism.

- In a large cohort study of patients with celiac disease, 4.3% were diagnosed with microscopic colitis, which is a rate of diagnosis that is 72-fold greater than for patients without celiac disease.103 Microscopic colitis is therefore more common among patients with celiac disease; it should be considered in the diagnosis of patients who have continued or recurrent diarrhea despite a strict gluten-free diet.

- The reported natural history of microscopic colitis varies. The rate of symptomatic remission ranges from 60% to 93% among patients with lymphocytic colitis13, 111 and 2% to 92% among those with collagenous colitis.26, 64, 111, 112 A study reported remission rates of 59% among patients with lymphocytic colitis and 34% among those with collagenous colitis after a 6-month follow-up period, with an additional 25% and 40%, respectively, showing “significant improvement.”37 Another study reported spontaneous remission in 15% and treatment-induced remission in 48% of patients with collagenous colitis after a 3.5-year follow-up period.61 Of the remaining 37% with ongoing disease, only 60% (22% of the entire cohort) required prolonged therapy
 
David, how did it go with the high doses of Pepto? Did you try it, and if so did it do anything for you? Also, how's the vegan/organic diet going? Have you noticed any improvement in your symptoms?
 
I never did get into the high dose pepto contrary to my intention (other than buying it). I'm terrible about taking medication, even OTC. I'm one of those people that wants to explore every other avenue he can, first. In my younger years, I was very traumatized by some stuff Western Medicine did to me and have developed a somewhat fair, somewhat unfair lack of trust in it.

That desire to not take meds is slowly being eroded...

I'd say the vegan diet has provided a very marginal improvement to my symptoms and other symptoms such as eye related issues have cropped up. Certainly not enough improvement where I plan to stick to it much longer. I'm currently researching the Next Best Thing to try :D

I wish I could provide better news :(
 
I'm sorry to hear that. :( I was hoping vegan would do great things for you. My eye doctor actually suggested that I try going vegan because, as he said, "Meat causes inflammation." I don't know how scientific that is or if it's even true, but I figured I'd wait to hear others' accounts of veganism first, and it sounds like it hasn't done much for you.

Are you going to try the Pepto thing? Or are you sticking to your no-medication guns?
 
I've been doing a lot of research based upon what your doctor said and found this. I think many dietary recommendations are too cut and dry. "Yogurt is fine" may not be true because so many yogurts have terrible ingredients. "Meat causes inflammation" may be true unless it's naturally raised meats.

I haven't decided on the pepto yet. My gut is killing me today so I may yet give in.
 
My best friend's mum was diagnosed with some form of microscopic colitis last year. I think it was LC. She was one of the lucky ones for whom it just went into remission of its own accord several weeks later and it hasn't returned since. Wish it happened like that for everyone!

Good luck with the Pepto if/when you decide to try it. I hope you can find a way to control things that doesn't mean having to resort to anything too strong medication wise, but the most important thing is that you feel better :).
 
Hi David :)

I went to see a (new) GI today. I found it interesting that one of the first things he said he was going to test for when doing my colonoscopy on Monday was Microscopic Colitis. I had never heard of such a thing until you had started this thread, so thanks ! :) I came back to see if I could inform myself a little better.

He made what I thought was an interesting comment while talking about it...he said it tends to happen to women more than men. Have you heard this before?

I know next to nothing about this all so I'm off to do a little research on it for a bit. Hope you're feeling better ??

by the way... How is your CC lately?

"3. Tracy, if you're still following along, I've recently had "Prolotherapy" for my costochondritis. I'll let you know how it goes."
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any luck with the Prolotherapy?
Luckily I haven't had a flare for the last couple of weeks or so. (hope I didn't just jinx myself! :ylol:)
 
He's testing you to see if you have microscopic colitis in addition to your Crohn's? If so, why?

Yes, I have read elsewhere that women supposedly have it more often than men. No idea what the sample size of that study was though.

Prolotherapy is WONDERFUL. My CC isn't gone yet, but it is MUCH better. I'm hoping 1-2 more rounds or prolotherapy will do the trick. And I'm going to be using it on all y old injuries that never quite healed right :)
 
David, Tracy hasn't been diagnosed with anything yet. She's an undiagnosie like me!

Tracy, make sure they take LOTS of biopsies when you get that c-scope. As I'm sure you know, Crohn's has a skip pattern - microscopic colitis does too!

Speaking of Pepto, my GI has just tried to put me on it. But I'm refusing it - mostly because he took me off of Asacol, which was working just fine, for a ridiculous reason (something about long-term side effects, of which there don't seem to be any for Asacol!). I'm putting my foot down and demanding to go back on Asacol. I know that microscopic colitis is a possibility for me, but I've always leaned towards thinking I've got Crohn's, and one of the reasons is that I do not respond at all to Pepto.
 
No, sorry if I misled you...I am still undiagnosed. (my daughter is the one that definitely has Crohns) He is specifically looking for Crohn's and Microscopic Colitis with the colonoscopy. He is also doing to Hydrogen Breath test to see about possible bacterial overgrowth on my intestines because of the severe adhesions found during my recent surgery.

Great news on the Prolotherapy ! :)
 
Ah, sorry about that!

Have you read about the Mastocytic Enterocolitis I've linked to in the Undiagnosed Club at all? If he's testing for MC, might as well stain for ME while he's at it :)
 
Cat we must have responded at the same time! :)

David I have my browser window open to remind me to read up on that, thanks. I just have a hard time retaining info lately because of the chronic migraines, so I'll have to wait until my brain has a "fog free" moment! Lol
 
I was diagnosed with collagenous colitis a little over two years ago but have been suffering with it for a little over 7 years. It took two colonoscopies and a doc who knew what they were doing to get that diagnoses. I have taken high doses of Pepto for 3 months did absolutely nothing for me, I have taken Entocort full dose for a year, helped a little, but no remission by far, had a 3rd colonoscopy that showed just as much inflammation as the 2nd one did which puts me to where I am now which is taking prednisone. It was great while I was on 40mg a day but as soon as the taper started so did the D. The doctors are now thinking about putting me on imuran which is rare for CC, but after trying all that I think they are lost on what to do for me. The pain is widespread on my bad days I hurt everywhere, I will have headaches for days, my hands wrists and legs hurt, my back will hurt and then to top it off my stomach swells and looks like Im 9 months pregnant, it hurts very tight, burns sometimes and then you have the D. Wish something would make this come to an end.
 
David said:
He's testing you to see if you have microscopic colitis in addition to your Crohn's? If so, why?

Yes, I have read elsewhere that women supposedly have it more often than men. No idea what the sample size of that study was though.

Prolotherapy is WONDERFUL. My CC isn't gone yet, but it is MUCH better. I'm hoping 1-2 more rounds or prolotherapy will do the trick. And I'm going to be using it on all y old injuries that never quite healed right :)
Click to expand...

As my understandind is depending on where the crohn's is located, and if mc is suspected that would limit the drugs available to treat both, prednisone works great on both upper and lower gi but generally doesn't bring remission to cc just crohns, meaning as soon as you taper it comes back, and if she has crohns in her upper colon entocort would help with the mc but not with the crohns
 
Nurse from the gastro clinic called today stating that the pathology report from a colonoscopy yesterday revealed Microscopic Colitis. I was admitted to the hospital and the colonoscopy was administered due to bloody diarrhea (never changed color of water, more clots than anything). Bloody diarrhea was attributed to internal hemorrhoids. You can read the whole story in this thread.

Still questioning how much bloody D hemorrhoids can produce? As well, can you have some visible erythema inflammation with microscopic colitis or does the colon look perfectly normal? Pain was predominantly in the umbilical region during this past episode, as well I had been having umbilical pain a couple of hours after eating.

I see my GI doctor on Monday afternoon to discuss these results, the nurse mentioned that the doctor might put me on the Entocort steroid. I just want to make sure I go with good questions, so please fire away...
 
Welcome to the microscopic colitis crew :(

1. The hemorrhoids are not producing the bloody diarrhea. They are producing the blood which is mixing with the diarrhea caused by the microscopic colitis.

2. Ask them if they subtype your microscopic colitis as lymphocytic colitis or collagenous colitis. Not that it really matters from that I can tell, but it'll at least let them know you're educating yourself :) And as we learn more, it may come in handy in the future to know.

3. Ask them if high dose pepto bismol (this is said to work in some MC cases, it did not for me) should be tried before steroid therapy.

4. My colon looked perfectly normal. I'm not sure if there can be visible inflammation as well.

5. Ask them what dietary changes they suggest.
 
Newbie

Hi, I'm new to joining this group. Last week I was diagnosed with CC and started generic Entocort. Unfortunately, I broke out in a rash after my 1st dose! As you all can imagine, I'm desperate to have this treatment work. After reading this thread I have a couple of questions:

What would be the dosage for "high dose" Pepto?

I've heard that LC & CC are thought by some to be 2 stages of the same condition. Can anyone speak to that? Which is more advanced?

Many Thanks!
 
Hi there and welcome to the forum. I'm sorry the Entocort didn't work well for you :(

The pepto is 8 chewables per day for 8 weeks. You can read more about that here.

Those that think LC and CC are the same condition feel that the LC comes first and CC thereafter.

I hope to see you around the community and wish you all the best!
 
Newbie questions

Hi all,

Just received a diagnosis of LC recently (after 7 months of symptoms) and was just started on Entocort. I'm still adjusting to the diagnosis and the prospect of an unclear prognosis. So far I seem to be tolerating the Entocort alright (some increased tiredness) and am hoping it will help the symptoms.

One of the things I could use some help with is pacing myself. I'm a graduate student and am typically very active (I used to exercise 6x/week). I'm having a difficult time adjusting to the fact that often I feel 80 years old, but even more than that, I feel like I don't know when to push myself and when to just rest. David, it seems like you have made some substantial emotional progress dealing with this disease. I was wondering if you had some advice in terms of when to slow down and when to push through. Are you working a normal 40/week job? Does it help your symptoms to rest for awhile (I feel like I haven't really taken real time off but I am still significantly behind on my dissertation)? What have you found to be most helpful mental health-wise?

Thanks for keeping this message board current. It's very helpful.

Thanks! :ycool:
 
Hi Climbergirl and welcome! I'm so glad you found your way here :)

I know that 80 year old feeling all too well :( And based upon your username, I'm guessing it's just as frustrating for you as it is for me; my heart goes out to you.

As I sit here typing this and do a little self reflection, I don't know that I really have made a lot of emotional progress. Getting a firm diagnosis helped in that I was able to let go of some of the fears of what it could be. And more than anything, figuring out many of my trigger foods so that my symptoms are MUCH less severe has made an enormous difference. I also take a couple supplements which seem to make a world of difference and get plenty of sunshine for vitamin D and related sun benefits. Point being, it's much easier to talk positively when you aren't feeling like crap :)

Other than the entocort, have you made dietary changes? Supplementation? What are your symptoms?

I don't work a traditional 40 hour job. I am performing strenuous physical work in my backyard creating a mini farm and then I work on the internet from home, so I'm blessed in than area.

As I believe you're an athlete, I think you know your body well enough to know when to push through. If you're feeling 80, that's not the time to run a 5k. But switching to something like yoga and doing exercises that keep the joints lubricated and blood flowing is vital.

I'm not in remission, but I'm now 185 lbs (was 168 at my worst) and feeling pretty darn good overall. It CAN and WILL get better if you put in the effort and good god is it heavenly.

*hugs*
 
Thanks for the warm welcome, David!:D

I hear what you're saying about knowing your body. I think I do generally have a good sense of what I'm up for...I just need to listen when the answer is slow down! :p

I have tried some diet changes/supplements, but actually in response to what I now think was a mis-diagnosis (I only got the LC diagnosis earlier in the week and had never heard of it before then). I was originally diagnosed with reactive hypoglycemia (they thought my blood sugar was dropping in response to food) and was on the paleo diet for about 3.5 months and was told to eat semi-constantly. I was also seeing a holistic nutritionist who had me on a range of supplements (but again, none for IBD since we didn't know that's what it was). The diet did help me gain weight back (I was down to 117 went back up to 132) and I seemed to be doing ok (but not great) on it, but then I got significantly worse (vomiting, very severe pain, more D, etc). So, I stopped that diet, and added in more grains and less meat/veggies and that has helped. For some reason, chicken and vegetables really seem to upset things but again, it's always hard to tell with diet.

I would say the worst symptoms for me are this weird shakiness (I'll drop things and it almost feels like my brain is shaking in my skull), fatigue and mental fog. The D and the abdominal pain can be pretty severe too, but those come and go throughout the day. I do actually think the Entocort is helping but the fatigue is still pretty annoying.

Anyway, I'm glad to be a part of this forum and hope to stay involved! *hugs*
 
Sorry for the delayed reply! I'm afraid my replies will be slow for about a week as I'll be traveling.

Boy howdy do I feel you on the brain fog. I feel like I used to be such a sharp, quick-witted person but often have trouble just finding words to articulate myself orally. I have some theories as to why this is that I will start testing in about a week.

I personally have trigger foods. You may want to try an elimination diet to see if you have any that you can avoid to reduce symptoms. The way you're talking, I'd guess you have triggers as well.

I don't have the shakiness or fatigue you mention. Have you had various vitamin/mineral levels tested such as B12, folate, magnesium, iron?
 
Yea, an elimination diet would probably be a good idea. I think I do probably have trigger foods but often it feels quite random. It's at least something to try. I know they've tested my iron levels and vitamin D levels (which were fine), but I'm not sure about other vitamins.

What are your theories on mental fog and how are you planning on testing it?

Hope you have fun on your travels! :)
 
David,
Thank you for your response. I've been trying to send a reply for days but was experiencing user error! Think I was suffering from the same mental fog Climbergirl is talking about! Chuckle.

I went to Baylor Medical Center's webpage to look for info on the high-dose Pepto but didn't find any details. Do you know if you just take the 8 chewable spread out over the day?

Also, is anyone aware of fundraising efforts for MC?
Thanks again, this forum is so helpful!
 
Climbergirl said:
What are your theories on mental fog and how are you planning on testing it?
Click to expand...
I theorize that it is due to:

- Stress
- Some B vitamin deficiency

I'm doing more stress reduction (meditation and yoga) and recently began taking a complex B vitamin every few days. I am indeed feeling a clearer than I have :)

Sunbny said:
I went to Baylor Medical Center's webpage to look for info on the high-dose Pepto but didn't find any details. Do you know if you just take the 8 chewable spread out over the day?

Also, is anyone aware of fundraising efforts for MC?
Thanks again, this forum is so helpful!
Click to expand...
I don't know the answer to either of your questions I'm afraid, sorry :(
 
Howdy from Texas!

I found this forum/ thread from a Google search. I was diagnosed with LC three years ago after having symptoms for 6-9 months....frequent D (3-8x day), and urgency.

First doc put me on Entocort. At first it seemed to help. The symptoms began to subside. I though I was cured. But before I was done with the first Rx symptoms began to return. The same doc tried a few other things, with no change. The worst was probably the HIGH dose of Prednisone which really did not go well with my psyche...

I bounced around to a few other so called "specialists" Most tried either the same treatments, or band-aid fixes to alleviate the symptoms. (none of which helped)

I have been without "professional" help on this for about two years. I got tired of spending my hard earned time and money with people who were just guessing. I really dont want to sound cynical, but I dont think modern medicine ALONE is the answer FOR ME.
Things that I have tried:
Gluten free diet
Multiple RXs from so-called professionals
low fat diets
abstinence from alcohol
random diets hoping for the best
living with it hoping it just goes away

...not much has changed. :(

I still have the same symptoms I had three and a half years ago. I am 38, and live an active lifestyle....a wonderful woman, kids, motorcycles, and other hobbys.

Just for reference in case anyone cares or is keeping track:
I used to use a lot of Advil in the past
As a teen, I was a frequent drug user...Marijuana and LSD
I have a fast metabolism, and frequently ate junk food and other poor nutritional choices over the years.
No RX given by the professionals has truly helped ( there have been half a dozen or more...I would have to dig out my records to see what they all were)
The high-pepto program helped only a tiny amount, but I was taking a little less (6 chewables a day)
I work on cars for a living, so I am exposed to nasty stuff on a daily basis
Occasional pain from my right abdomen, just below my rib cage
I am otherwise healthy, and in above average physical shape.
My diagnosis was via biopsy. I have had three.
All other tests were good (normal) or inconclusive

Although I have lived with this for years, my patience has begun to grow thin. The current plan is to try a Vegan diet, which will be difficult for me...I want to try this diet not just for this, but for other reasons as well.

I hope this wasnt too long of a post. I admit I am frustrated about this condition, and it has been getting to me mentally. I'm really not trying to whine, I just hope that my experience can help others, and that people will begin to believe that LC is NOT just for Old Ladies.... ;)
 
Hey Dave and welcome, I'm so glad you joined us. Yeah, I wish they'd get rid of the "LC is for old ladies" thing. My GI even said, "I'm surprised you have this as it's mostly older women who get it from what I've read."

I definitely popped advil and motrin like it was going out of style when I was younger (baseball) but that's about all we have in common. Well, that and the fact we've both tried a load of different diets. I think I'm going to try the Specific Carbohydrate Diet next. I ordered the book so we'll see how I feel once I read it.

Out of curiosity, do you (or anyone else with LC) have any issues with your eyes?
 
Eye issues? Such as?
I have had pretty good vision most of my life, but just recently got glasses for up-close stuff.

One other thing I forgot to mention:
Growing up I drank a lot of soda, then moved to coffee and tea. All sweet and caffeinated.
 
I have inflammation in my right eye that comes and goes. It's very annoying at best, painful at worst. I assume it's related but am curious how many others with LC have it.

For that matter, deep within my nose is so inflamed I can't breathe through it much of the time.

Same here on the drinks. I think we slowly poisoned ourselves.

*takes a sip of flax/chia smoothie*
 
I've recently begun the Specific Carbohydrate Diet. Has anyone out there with Lymphocytic Colitis or Collagenous Colitis tried it?
 
Hello microscopic/collagenous/lymphocitic colitisies! I thought I'd write a quick post about my mom's diet. I've mentioned on here she has Crohn's but it's really officially Collagenous Colitis as of a few years ago (She was diagnosed with Crohn's in Guatemala like 40 years ago, but they figured out by biopsy that its actually collagenous colitis. I keep forgetting!). Anyway, she follows a really strict diet and it's basically the only thing she does besides occasional Welchol.

No red food coloring (including cough drops, candy, benadryl, even Pepto-Bismol, seriously nothing pink or red)
100% organic everything
Zero caffeine (not even chocolate-can you believe she went to Switzerland and didn't have a bite of chocolate?!)
And last but most importantly: NO SOY. nothing. Almost everything processed has soy lecithin or some kind of soy emulsifier. She said cutting out soy changed her life. She's really strict with it. For real, you'd be shocked how much food has soy in it, and also by how much she swears by it.
Mostly she eats potatoes, rice, sandwiches, meat, and veggies. It's pretty bland but she manages to keep everything yummy.

I know some of those things are weird but she really has figured out what works for her IBD. Her diet is super finely tuned and I admire how careful she is with it. Anyway, I want to learn more about Collagenous since ya know, she has it and it's not an IBD that many people know about / I know about! I'll be lurking this thread :)
 
I have been on the Specific Carbohydrate Diet for about two weeks now. I am feeling SIGNIFICANTLY better. I am not symptom free, but it feels like I may be headed in that direction. Interestingly enough, my costochondritis is feeling even better as well. Days 3-10 or so I experienced massive cravings and my emotions got a little out of whack. I am still getting cravings (especially when my wife eats cookies in front of me!), but nowhere near as bad.
 
David, my husband eats popcorn in front of me so I feel your pain! Glad to hear the diet is working for you so far. I've been taking psyllium husks for just over a week now and have noticed a significant improvement myself (with the exception of the day I doubled my dose of psyllium and wound up horribly bloated and crampy - as long as I take just one teaspoon instead of 2, I feel great).

Emily, that's interesting that your mother has CC and you have Crohn's. I know IBD can run in families but it interests me that different family members will get different forms of IBD. I wonder why that is? I had a great-grandfather with UC and I most likely either have Crohn's or some form of microscopic colitis. Great-grandfather and I are the only two I know of in my family with IBD (I have an aunt with Crohn's but she's related by marriage). It seems odd to me that he had UC and I have something other than UC. But my GI says I definitely don't have UC because I don't bleed (well, I rarely do, but usually from either a hemmie or a fissure, not from ulcerations).
 
Crazy right, Cat? She and I are the only IBD'ers in the whole family, no distant relatives or anything. We also look exactly the same. But the nature of our disease is worlds different in many aspects (diet doesn't help me, I was dxed as a child, etc.) Interesting about your great grandpa having UC, perhaps just the general pattern for IBD is passed on, but manifests itself in various ways? Your definitely right, it seems like when people do have IBD relatives, it's a different type than their own... I've heard of a few of these on here!
 
Hello everyone!
I was just diagnosed with Mastocytic Enterocolitis after so many tests and years of searching for answers. My doctor called it "The Other IBD" lol.
In a huge flare right now and on Entocort and like 5 other meds.
Was just wondering if anyone knew more about it? I've googled it but there's just not much there for it, probably because it's just rare, no one talks about it and most doctors don't know about it.
 
I've researched Mastocytic Enterocolitis quite a bit (I actually own MastocyticEnterocolitis.com and plan to build a site there one day). I'm glad they finally got you diagnosed. Are you on antihistamines in addition to the meds you stated?

I don't think it's that rare, what I think is rare is GIs who stain for mast cells so people go undiagnosed. I think a lot of the "IBS" out there is ME. For that matter, I think that some UC and CD cases are misdiagnosed ME.
 
It's crazy though because it's a form of IBD, but no one really knows about it. I've had inflammation and deep ulcerations through out my digestive tract, lost a lot of weight, and so many other complications because of it. I'm just glad that my doctor knew to do the stain to look for it, since one of my genetics came back for an inflammatory response to the body.
I look forward to you building that site and spreading more information about it.
 
I am on...
Entocort
Cetirizine
Ranitidine
Naltrexone
Singulair
Vitamin D

and they have not talked to me about diet.
 
Last edited:
In case you didn't know, that means you are indeed on antihistamines :) I like your doctor. Did your doctor put you on the Vitamin D? And how many IU? And did they put you on the naltrexone as well?
 
Yes, my doctor did put me on Vitamin D, I was almost deficient in it. I am on 50,000 IU.
I love this doctor, she's been wonderful so far. My last visit with her I was in a flare (still am) and she touched my lower left and right of my abdomen and said she could feel inflammation and that I probably had ulcers again, which would explain all the pain and the 30+ bowel movements a day. :(
 
I see you edited in that you have not had diet discussed with you. As you now know, you've got boatloads of mast cells going crazy. Mast cells take center stage when it comes to the induction of allergic inflammation.

My primary theory is that people with Mastocytic Enterocolitis are extremely sensitive to certain foods, additives, and/or residues and diet changes can do a lot to improve symptoms. A secondary theory involves reaction to toxins certain bacteria are releasing in your intestines.
 
I've had allergies checked for all sorts of things from an allergist, and everything was fine. Also, I'm not sensitive to gluten. I tried a gluten-free diet months ago and it didn't work at all for me, things were still horrible (also in my genetics celiac is negative). So, i don't really know what is going on. :/ I'm so confused. I don't understand how I did a capsule endoscopy and shown deep ulcerations, like every inch of my entire small intestine and large intestine, and have a lot of inflammation, but it's not crohn's or colitis, it's a whole different type of IBD. what is the difference between crohn's and mastocytic enterocolitis? :( All that's on the internet is that is the "new" IBD, or that it's linked to IBS, but my doctor specifically told me it's not IBS at all. She told me, it's definitely IBD and it's a chronic disease that has no cure, but can be controlled with meds just like crohn's and colitis. I'm just confused, there's not much information out there. It's all different, it's not very specific.
 
Emily, that's interesting that you and your mother are the only two in your family with IBD. Just like me and my great-grandfather - in my case, it makes me wonder if the genetics are recessive and/or tend to skip generations. It would have skipped over my grandma and my dad (well, my dad says he does have diarrhea often but no other symptoms, and his d seems to be because he eats pretty much nothing but junk food and fast food). And the genetics didn't appear to go to anyone else like my grandma's siblings, my dad's siblings, or my brother. Just me, lucky me. ;)

David, on the subject of antihistamines, do you know if they work for everyone who has ME? I take antihistamines fairly regularly due to nasal allergies but have never noticed a correlation between my gut symptoms and antihistamine use. I'm assuming that probably means I don't have ME but then again I don't know.

Sunshine, have you ever tried an elimination diet? That's where you cut out most foods and then slowly add foods back to your diet one by one to see if they affect you. It might be worthwhile to try.
 
Cat-a-Tonic said:
David, on the subject of antihistamines, do you know if they work for everyone who has ME? I take antihistamines fairly regularly due to nasal allergies but have never noticed a correlation between my gut symptoms and antihistamine use. I'm assuming that probably means I don't have ME but then again I don't know.
Click to expand...
I don't know if they work for EVERYONE, no. But two different types of antihistamines are usually prescribed for people with ME.
 
Newly diagnosed MC

Hi all,
I am a 44 year old active, fit female who was "healthy as a horse" up until 6 months ago when I started experiencing explosive D. up to 13 times a day. I put off seeing a doctor for a few months, became extremely drained and fatigued and finally went to my PCP in December 2011. I had blood drawn, did stool samples, etc. which basically ruled out anysort of parasite, etc. She then referred me to a GI specialist. I had a colonoscopy Feb. 10th and was diagnosed with Microscopic Lymphocytic Colitis after the doctor got my biopsy results back. When she told me the diagnosis she would make a statement such as, "This usually occurs in people a lot older than you, but that's not the case here" and, "Usually there is a medication change/switch, excessive use, but that's not the case with you". I was rarely if ever sick and don't even take Tylenol. She immediately put me on Entocort and after 2.5 weeks I am finally feeling some relief. Dave..I believe I do have 2 lipomas on my belly. Not sure how long they've been there as I've recently changed my diet/exercise and have lost close to 25lbs. I have a follow up with both my PCP and my GI and will ask about these bumps as my biggest concern up to this point has been the frequent D.
My biggest concern is what's going to happen when I taper off the Entocort. I have since taken out all gluten, dairy, spices, and caffeine in my diet. I continue to work out at a high intensity, lift weights, run on the treadmill, etc. I am still feeling drained but cautiously optimistic.
Glad I found this site. I will be looking around and reading all the great information here! Thanks!
 
Hi Cathy and welcome! :) Sorry to hear about your diagnosis but at least they have it figured out. And the whole "older population" thing is a load of crap, they just didn't have a sizable enough sample size as most of us getting diagnosed these days are under 50.

Yet one more lipoma connection. I wonder if there's some sort of genetic component to that.

Good call on those dietary changes. I'm personally on the Specific Carbohydrate Diet which does the same and cuts out other grains and carbohydrates. I was doing great for a little while on it but the last few days my pain has come back a bit. So it's still very much an experiment but I plan to stick with it.

We're here for you anytime :)
 
Sunshine, if you're out there, I've been thinking about you lately. I didn't feel comfortable saying this as I'm no doctor and was excited for you, but in all the reading I've ever done about Mastocytic Enterocolitis, I've never heard of there being ulcerations like you're experiencing. If you're feeling better then ignore me.

But this study is actually were the term Mastocytic Enterocolitis was coined and from it:

All 47 study patients had chronic diarrhea of unknown
cause, and no specific underlying disorder could be identified
after conducting the recommended history, physical
examination, routine laboratory tests, and stool analysis.
Twenty-one of the 47 patients also had variable and intermittent
abdominal pain and were diagnosed as having
possible diarrhea-predominant IBS, based on Rome II diagnostic
criteria.4 No patient had documented systemic or
cutaneous mastocytosis. Assessment of serum tryptase
levels in the 3 patients analyzed showed no elevation. On
endoscopy, the colon and duodenum were described as
being normal in 43 of 47 patients and as showing mild
edema in the other 4 patients. In 34 of 47 patients, the
colonic and duodenal mucosa appeared normal on routine
hematoxylin-eosin staining (Figure 1) or showed a mild
and focal increase in mixed inflammatory cells in the lamina
propria (Figure 2). In the other 13 patients, there was
a mild increase in eosinophils in the lamina propria, without
any other abnormality (Figure 3). In particular, there
were no specific pathologic features such as crypt distortion
or mucin depletion, cryptitis, crypt abscesses, granulomas,
thickened collagen band, excessive eosinophils,
increased intraepithelial lymphocytes, shortened duodenal
villi, parasites, or viral inclusions.
Click to expand...

However, ulceration may be present. I'm just sharing what I've read. :)
 
Hello all, I wanted to give an update after a significant change in my condition.

As there are many cases being discussed in this thread, here is a summary:

I was diagnosed with LC 3 years ago after suffering with symptoms for 6+months.
Primary symptom was urgent, frequent D..probably 8-20X a day which varied over the past 3.5 years. Occasional bleeding, and frequent (2-20X a month) abdominal pain.
I was given many meds and steroids. NO treatment advised by 3 GI specialists gave an improvement.
Multiple diets attempted, with NO CHANGE in symtoms

In early February of this year, about a week before Valentines Day I began a new self-created treatment.

I took a multivitamin at night just before bed.
When I awoke, I drank a full glass of water (24+ oz), then took:
1000 mg Vitamin C
500 mg Niacin
200 mg B6
250 mg B12
2-3 calcium carbonate antacids
2 pepto chewables

I took all this BEFORE eating breakfast, drinking coffee, or anything...even before I brushed my teeth.

I would also take 2 pepto chewables and 2-4 of the antacids with each meal.
No diet changes.

About 7 days later my symptoms started to subside. Urgency and frequency diminished first, followed shortly by "forming" of stool.
I continued the above regimen.
Approx 12- 14 days in I was virtually symptom free. Normal BMs 3-4x a day, no abdominal pain.
I felt relieved. This was the first time in over three years that i felt NORMAL again!!
A few days later I started to cut back on the pepto to maybe 4x a day as I was almost getting constipated. About a week ago I quit taking the antacids EXCEPT when eating really greasy/ fatty/ spicy foods. Yes I can eat those things again!!

I have now been symptom free for over TWO WEEKS, which to me seems like an eternity. I can now go out to public places without first locating a rest room...I no longer have to plan car trips around potty breaks. I feel so much more energetic and just "better" overall.

I don't know three years worth of doctors, RXs, OTC meds and diet changes had NO EFFECT, yet this regimen did.
I plan to continue with the vitamins until the bottles are empty, then I will probably cut the dose in half in a couple months.

I CAN NOT advise anyone to do what I have. I do not know if there are any side effects or long term issues with what I have been taking. I was frustrated with so called PROFESSIONALS who did nothing more than guess at a treatment, so I took matters into my own hands. I wish I had taken better notes as far as what happened when, but I got frustrated with journal readings in the past that just said "no change"

I am passing this info along in HOPES that it will bring some relief to someone, or at least spread hope...something I had long lost.

Good luck my friends, I wish you the best!
 
David said:
Thank you so much for sharing that info Dave! If you'd care to share, how did you come up with that specific regimen?
Click to expand...

I was watching a couple of documentaries on Netfix, one of which was on alternative treatments. The next day I did some internet searching about vitamins and blood type O- (my type). I stopped by the grocery store on the way home and got the vitamins and a big bottle of the chewable antacids. I wanted to "spread out" the intake which is why I took the multivitamin at night and the others in the morning.

EDIT: I don't know what it is showing "alternative treatments" in my post as a link. Just to clarify I did not get my info from that link....Im not saying the info there is incorrect, I just want to be clear that I read it elsewhere...
 
Anatabloc....

Thanks for the welcome David and Dave73, glad you've found a regimen that works for you! I'm hopeful that when I go off the Entocort, I too will have success.

On another note...anyone heard anything regarding the use of Anatabloc, or anatabine in treating inflammation? I've got a brother with ulcerative colitis, went off Remicade and is controlling his symptoms with Anatabloc and diet.
 
Just found this thread so I sat here and read it all. I was told this morning that I have colitis (I think she said microscopic, but I was really just hearing there IS an answer!). My colon appeared normal when they did the colonoscopy, but the biopsies showed inflammation. I began having symptoms when I was 15, so about 16-17 years ago. They have always gone away for a while then come back. I have tried a gluten free diet, vegetarian diet, and a lactose free diet. The gluten free and vegetarian diet didn't help at all, and after about a year I slowly started adding these foods back into my diet. I do not drink milk, and really never have. I wouldn't drink it as a child. The few times I remember drinking it I felt like my stomach was sour. No other symptoms, it just doesn't seem to agree with my stomach. I can occasionally have yogurt or cheese without a problem. I have taken pain meds/nsaids occasionally, but never for extended periods of time and never more than a recommended dose. My symptoms include diarrhea, fatigue, that foggy feeling I've read some of you talk about, joint pain, migraines, and psoriasis. The psoriasis was diagnosed when I was 15, so it's been there for a while, too. I have had more blood work done in the past 2 years than I've ever had before, and only managed to learn that I had low b12 and vitamin d. I have been on b12 injections for about a year now, along with vitamin b complex supplements. I've been on vitamin d for about 4 months. All other blood work was normal. I'm hoping to be able to have a full conversation with the dr when I go for a follow up in May. Today I was really too excited about having an answer to think of what questions I should be asking, especially since a nurse had called me 2 days ago and said all my results from the colonoscopy were normal! I'm thinking it's pretty lame to be excited because a physicians assistant looks at you and says your colon is inflamed!
 
Hi Jackie and welcome to the club. I bet it has been quite a journey getting here.

What were your vitamin B12 and vitamin D levels last time you were tested?
 
Last check for b12 it was up to 200. That was 6 months ago, and I'm supposed to be going for another check soon. I started off below 100, (I think it was in the 80's, but I don't remember for sure) so it's slowly going up. Vitamin d was 12, and it hasn't been rechecked yet. I'll have it done with the b12 if possible, but since different dr's found it I might end up waiting 2 more months until the full 6 months are up. Is it normal to have low levels with microscopic colitis? I know that b12 is mostly absorbed in the ilium, however mine appears normal both visually and microscopically.
 
Hi Jackie,

Wow, below 100 is dangerously low. You poor thing. I've read that microscopic colitis can indeed cause low B12 levels. My guess is it's due to the chronic diarrhea messing up the enterohepatic circulation system (that's what deals properly with bile salts and keeps B12 in the system). How often are you taking the B12 injections, monthly? If you were at 200 last checkup and it has been 6 months, I'd strongly suggest getting your levels checked soon so you can find out if your current dosage is sufficient as brain fog and fatigue can be caused by B12 deficiency.

With levels that low though I'd be curious if they'd be interesting in testing to make sure you are producing sufficient levels of intrinsic factor. That's what is needed for B12 to be properly absorbed. Most (non-elderly) people with pernicious anemia who don't have IBD have issues with intrinsic factor.
 
I started off with weekly b12, then moved to monthly after 6 or 8 weeks. Not sure they ever checked for intrinsic factor. I was seeing a neurologist for unexplained hearing loss and he ordered a bunch of blood work. When he saw the b12 levels he sent me back to my gp to get the b12. My GI does know what the levels were, and also about the vitamin d. They aren't too worried about the vitamin d, seems like most people around here are deficient this time of year! The neurologist asked me if I was a vegetarian, and I wasn't at the time and hadn't been in years, and if I had any type of weight loss surgery, and I haven't. He did ask about any diagnosis of chron's, or anything having to do with the intestine, but at the time I had been assured by a previous GI that I didn't have anything wrong with me so I said no. Seems like some things are starting to add up.
 
Microscopic colitis is the first diagnosis I received when i began seeing the GI specialists in the early 90s. Later on other doctors mentioned celiac even though all tests came back negative. (I would mention on wheat elimination trials that I felt better avoiding wheat. Today i realize I have wheat sensitivity.) And then later the head GI specialist at the local hospital mentioned that since I was not an older lady, and M.C. was mainly a condition older ladies develop, he was giving me a diagnosis of IBS, even though I have inflammation in the colon. As I like to joke, if I paid the physicians enough, I probably could have the condition named after me. (You have a diagnoses of Beachism!)

Microscopic colitis has been a tough condition to deal with. And in some respects I'm surprised I'm still here. In the early 2000s, I went through a pretty ruff period. But doing better these days following a paleo diet, plus taking a few supplements like fish oil, and vitamins D3 and K2. Of late I've been zeroing in avoiding a few foods, beef, gelatin, and milk in particular. Energy levels are up when I avoid cow items, but the grumpy gut remains which causes frustration. I wouldn't be surprised if this was my answer, but time will tell. Hopfully the gut will behave better soon. To add to the confusion, I know I can eat cheese and not be sick to the gut, but will feel exhausted and chilled all day.

I do have a theory about wheat, and milk. It seems the two foods go together. It is rare to eat wheat with out having some kind of dairy with it - cheese, butter, milk, etc.

People with IBS have good luck helping their condition by taking mega doses of calcium tablets. It seems to plug them up good. Since dairy is high in calcium, and known for its constipating effects, it does have me wondering if it is possible to eat wheat frequently with out consuming diary. I wonder this because during most of the 90s I was ill with M.C. but much more energetic. And during that decade I pretty much avoided beef, maybe eating it once a month, and had no dairy products, but I ate a good amount of bread during that time.

Regardless, I keep plugging away.
 
Question that I cannot seem to find the answer to: Does microscopic colitis wake you up at night? When I'm having problems I will wake up often from the pain/cramps in my stomach. When this happens they get so bad that hubby usually wakes up to me crying in the bathroom. Sorry if this is tmi, but the pain continues to get worse until everything inside pretty much explodes out, and it's mostly liquid. Sometimes there are parts that aren't liquid, but they aren't enough to have stopped anything from coming out. Is that considered normal for microscopic colitis?
 
That happens to me about once every six weeks. Sure does hurt...

The first thing I do when I wake up and head to the bathroom is get naked because I know I'm going to be so covered in sweat by the time I'm done I might as well avoid drenching clothes.

Good times.
 
That's putting it mildly! I've had 3 kids, 2 naturally......give me childbirth any day! As soon as I wake up I know I'm in for it.
 
One of my new favorites that started about six months ago is rectal spasms that wake me up. It literally feels like I crapped the bed to the point that I check. Nothing yet (thank goodness) though. It's weird.
 
I was reading a few minutes about the correlation between celiac and microscopic colitis. I did have an endoscopy and it was ruled out for me, but it did seem like a high percentage of people with celiac have microscopic colitis.

The rectal spasms are horrible, and I have actually had accidents several times. All but one, thankfully, have been at home. I've made it to the point that I don't go out if I don't have to, and I never eat before I go. I'm hoping the entocort I started today will help, as I haven't had any luck with imodium or pepto.
 
Fingers crossed for you Jackie :) Please keep us updated. As of yet I haven't taken any prescription meds but I've thought pretty hard about it a few times...
 

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