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02-06-2012, 07:58 PM   #61
Dave73
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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....
02-06-2012, 10:19 PM   #62
David
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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?
02-07-2012, 09:31 AM   #63
Dave73
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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.
02-07-2012, 09:51 AM   #64
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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*
02-16-2012, 01:10 PM   #65
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I've recently begun the Specific Carbohydrate Diet. Has anyone out there with Lymphocytic Colitis or Collagenous Colitis tried it?
02-26-2012, 11:59 PM   #66
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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
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02-27-2012, 10:35 AM   #67
David
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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.
02-27-2012, 01:22 PM   #68
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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).
02-27-2012, 05:39 PM   #69
Emily
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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!
02-29-2012, 10:48 PM   #70
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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.
02-29-2012, 11:57 PM   #71
David
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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.
03-01-2012, 11:24 AM   #72
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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.
03-01-2012, 11:25 AM   #73
David
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SS, do they have you on antihistamines as well? Have they talked to you about diet?
03-01-2012, 11:34 AM   #74
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I am on...
Entocort
Cetirizine
Ranitidine
Naltrexone
Singulair
Vitamin D

and they have not talked to me about diet.

Last edited by SunshineSmile; 03-01-2012 at 11:38 AM. Reason: Answering about diet
03-01-2012, 11:37 AM   #75
David
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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?
03-01-2012, 11:41 AM   #76
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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.
03-01-2012, 11:49 AM   #77
David
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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.
03-01-2012, 12:03 PM   #78
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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.
03-01-2012, 02:12 PM   #79
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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.
03-01-2012, 11:43 PM   #80
David
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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.
I don't know if they work for EVERYONE, no. But two different types of antihistamines are usually prescribed for people with ME.
03-08-2012, 02:46 PM   #81
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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!
03-08-2012, 02:51 PM   #82
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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
03-08-2012, 06:13 PM   #83
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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.
However, ulceration may be present. I'm just sharing what I've read.
03-09-2012, 07:29 PM   #84
Dave73
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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!
03-09-2012, 07:31 PM   #85
David
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Thank you so much for sharing that info Dave! If you'd care to share, how did you come up with that specific regimen?
03-09-2012, 07:40 PM   #86
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Thank you so much for sharing that info Dave! If you'd care to share, how did you come up with that specific regimen?
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...
03-10-2012, 12:03 PM   #87
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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.
03-23-2012, 04:05 PM   #88
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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!
03-23-2012, 04:19 PM   #89
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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?
03-23-2012, 04:32 PM   #90
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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.
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