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



 
07-29-2011, 03:02 PM   #31
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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.
07-29-2011, 05:14 PM   #32
xJillx
Your Story Forum Monitor
 
xJillx's Avatar
 
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
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!
__________________
Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
08-23-2011, 11:31 PM   #33
dpoteet
New Member
 
Join Date: Aug 2011
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
08-23-2011, 11:48 PM   #34
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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.
08-31-2011, 06:12 PM   #35
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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
09-01-2011, 04:39 PM   #36
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
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?
09-01-2011, 04:44 PM   #37
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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

I wish I could provide better news
09-01-2011, 05:07 PM   #38
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
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?
09-01-2011, 05:12 PM   #39
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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.
09-01-2011, 05:46 PM   #40
Ian
Senior Member
 
Ian's Avatar
 
Join Date: Feb 2010
Location: London, UK
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 .
__________________
Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
6MP (75mg daily)
Asacol (3 x 800mg, twice daily)

Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
10-12-2011, 03:17 PM   #41
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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."
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! )
__________________
~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
10-12-2011, 03:22 PM   #42
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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
10-12-2011, 03:33 PM   #43
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
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.
10-12-2011, 03:34 PM   #44
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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 !
10-12-2011, 03:43 PM   #45
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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
10-12-2011, 07:17 PM   #46
Crohn's Mom
Moderator
 
Crohn's Mom's Avatar
 
Join Date: Mar 2011
Location: Florida

My Support Groups:
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
11-13-2011, 03:48 PM   #47
crystal5520002000
 
Join Date: Jun 2009
Location: kansas city, Missouri

My Support Groups:
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.
11-13-2011, 03:52 PM   #48
crystal5520002000
 
Join Date: Jun 2009
Location: kansas city, Missouri

My Support Groups:
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
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
01-06-2012, 11:34 PM   #49
whyclef
 
whyclef's Avatar
 
Join Date: Apr 2011
Location: Tyler, Texas
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...
01-06-2012, 11:45 PM   #50
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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.
01-10-2012, 04:59 PM   #51
Sunbny
New Member
 
Join Date: Jan 2012
Location: pleasanton, California
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!
01-10-2012, 10:39 PM   #52
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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!
01-12-2012, 09:58 PM   #53
Climbergirl
New Member
 
Climbergirl's Avatar
 
Join Date: Jan 2012
Location: Ann Arbor, Michigan
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!
01-13-2012, 09:44 AM   #54
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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*
01-13-2012, 11:15 AM   #55
Climbergirl
New Member
 
Climbergirl's Avatar
 
Join Date: Jan 2012
Location: Ann Arbor, Michigan
Thanks for the warm welcome, David!

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*
01-15-2012, 07:14 PM   #56
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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?
01-16-2012, 09:36 AM   #57
Climbergirl
New Member
 
Climbergirl's Avatar
 
Join Date: Jan 2012
Location: Ann Arbor, Michigan
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!
01-16-2012, 01:27 PM   #58
Sunbny
New Member
 
Join Date: Jan 2012
Location: pleasanton, California
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!
02-03-2012, 05:36 PM   #59
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
What are your theories on mental fog and how are you planning on testing it?
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

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!
I don't know the answer to either of your questions I'm afraid, sorry
02-05-2012, 09:48 PM   #60
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Out of curiosity, those of you diagnosed with microscopic colitis, how many of you have lipomas?
Reply

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


All times are GMT -5. The time now is 02:00 PM.
Copyright 2006-2017 Crohnsforum.com