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Crohn's Disease AND microscopic colitis??

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Crohn's Disease AND microscopic colitis??  
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coolgirl09
Regular Member
Joined : Sep 2009
Posts : 21
Posted 2/27/2013 11:39 AM (GMT -7)
I've been lurking on here for too long!

I was diagnosed with Crohn's Disease in August of '09, and thankfully, Remicade threw me into remission and I've essentially been symptom-free since then. I had a clean scope in '11, but then a couple months ago things started to change.

I've been having RLQ and LLQ pain, along with some cramping and softer stools. It's all been annoying but not life-changing (thankfully!). I went in for a colonoscopy a couple weeks ago, and my GI saw....nothing! Great, right? Except I was still having the pain. Got a breath test for possible SIBO which was negative, but then my doc's PA told me today that I had microscopic colitis (the lymphocytes showed up on the biopsies when I was scoped). She said it was distinct from Crohn's Disease and yet treated similarly.

This seems so strange to me. Since I've already been diagnosed with Crohn's (back in '09 it was very clearly Crohn's Disease), I assumed this inflammation was just the start of a flare or something. Apparently it's different.

I'm wondering if anyone else out there has also been diagnosed with Crohn's and microscopic colitis? My doctor's currently taking me off of the Apriso (Crohn's maintenance med) and putting me on Entocort.

Thanks!
-Bekah
Dx'ed with CD in 8/2009
currently on:
Iron
Zoloft for my craziness
Remicade for CD (5mg/kg every 8 weeks)
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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 2/27/2013 1:16 PM (GMT -7)
It's pretty rare to have both CD and UC/MC..about 2% of the IBD populations has both forms of IBD....One thing to note is, with CD since it can affect your entire GI tract from mouth to anus and more than one area at a time, having a colonoscopy alone isn't sufficient enough to keep tabs on where your CD may be affecting....a small bowel follow through is also necessary so that when the signs of CD are no longer showing in your colon/lower part of the GI tract then the upper GI tract needs to be tested when symptoms of disease are still present.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~
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73monte
Veteran Member
Joined : Mar 2007
Posts : 2030
Posted 2/27/2013 8:46 PM (GMT -7)

My Daughter has Crohn's in her TI, but has recently spread to her cecum, and after her last scope, they found microscopic colitis throughout her large intestine.

I might be confused, but they call any inflammation in the colon, colitis, even though it's actually Crohn's in her colon, not ulcerative colitis. Could this be the situation you have?

What Pb4 stated about 2% of IBDers having both Crohn's and Colitis, is something I've never heard of before. What an unbelievable combination.

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Probiotic
Veteran Member
Joined : Mar 2007
Posts : 2832
Posted 2/28/2013 6:11 AM (GMT -7)
Hey pb4- you have mentioned this small % of people who have both UC and crohns many times before. I have never, ever seen this anywhere and if it is documented I'd be very interested indeed! Do you have any link, any paper, citation, study or whatever for this concept? I have googled and googled and pubmed'ed for it to no avail- all I get in the literature is that people have either crohns or UC, with a goodly chunk ending up indeterminate (and in the case lf surgery for UC, around 7% of "100% solid UC diagnosis" patients later turning out to really have crohns, post surgery)- but ultimately it is implied that its always just a limitation of diagnosis i e that it is basic assumption that IBDers truly have one or the other but never both.

Post Edited (Probiotic) : 2/28/2013 6:15:10 AM (GMT-7)

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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 2/28/2013 11:34 AM (GMT -7)
Hi probiotic, I read about it one of my CCFC journals. I have so many of them it would take me a while to try and find it and who may have researched it.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~
profile picture
pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 2/28/2013 12:47 PM (GMT -7)

Probiotic, this is all I can find so far (via google)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1420082/ 

The same microorganism that causes the rare patient to develop both Crohn's disease and ulcerative colitis [26-29] usually causes some individuals to develop one disease or the other.  Below is the link where this info came from...

http://www.gutpathogens.com/content/2/1/21

I'll add to this later if I can find more on % stats of one patient having both...gotta clean bathrooms and watch my grandbaby now LOL!


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~
profile picture
Joni222
New Member
Joined : Feb 2013
Posts : 4
Posted 2/28/2013 7:10 PM (GMT -7)
Coolgirl09. I was diagnosed with Crohn's in 2001, and just had another scope a few months ago. My doctor told me he now found Microscopic Colitis in the low part of my intestine or colon. So I was concerned and he told me he is just gonna leave it for now and treat it as if it is Crohn's. I don't know if he is doing this because I am on Medicare and disabled or because he doesn't want to do paper work. But yes, I just was diagnosed with Microscopic colitis and I already have crohn's. Don't know why he doesn't want to deal with it yet. He said he was just gonna group it in with the Crohn's. ?????
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coolgirl09
Regular Member
Joined : Sep 2009
Posts : 21
Posted 3/1/2013 11:18 AM (GMT -7)
Thanks everyone for your replies! @pb4--I have never thought about someone having both diseases! Ick! You mentioned UC/MC together--would you consider them the same disease?

@73monte and Joni222--I'm glad to know I'm not the only one that had this happen! (sorry that all of us have to go through all this, though!) How have your doctors treated the microscopic colitis? Have they done anything differently?

At this point I'm on Remicade, Imuran, and Apriso. My GI took me off of the Apriso (which I guess sometimes helps with MC, but isn't helping me) and added Entocort.

I'm a little frustrated because I could only meet with my GI's physician's assistant and she has in the past given me contradicting info to what my GI has said. So, I'm not convinced that because she told me Crohn's and microscopic colitis are different entities, that truly is the case. I seem my GI in a month and will have a nice long conversation about it with him then. In the mean time, I hope this Entocort works!

I agree with you 73monte--it seems as though inflammation in my colon would be Crohn's colitis, however, I guess there are multiple types of inflammation, and microscopic colitis is not the typical Crohn's presentation.

I'm worried my Remicade is wearing out its usefulness. I've had three and a half amazing years on it, and perhaps the Crohn's honeymoon is over. Ugh...
Dx'ed with CD in 8/2009, Lymphocytic colitis 2/2013
currently on:
Zoloft and Xanax for my craziness
Apriso, Imuran, and Remicade for CD (5mg/kg every 8 weeks)
Starting Entocort for microscopic colitis--here we go!
profile picture
pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 3/1/2013 11:33 AM (GMT -7)
Hi coolgirl...I think MC and UC are different from each other...MC is also known as "collagenous Colitis"...

The two most common forms of inflammatory bowel disease are ulcerative colitis and Crohn's disease, but two others fall under that same umbrella: lymphocytic colitis and collagenous colitis. Of all the inflammatory bowel diseases, collagenous colitis is arguably the least serious, though it is harder to detect.

Microscopic colitis is actually composed of two similar, but separate conditions: collagenous colitis and lymphocytic colitis. The symptoms of microscopic colitis include chronic, watery diarrhea and cramping or abdominal pain.
Essentially, collagenous colitis is characterized by an increase in diarrhea, caused by an increase of collagen in the connective tissue between the large and small intestines. Unlike ulcerative colitis, it cannot be diagnosed through a routine colonoscopy, because there are no visual sores or ulcerations that indicate its presence. A biopsy is required to determine if the tissue is affected, and many patients elect to simply not know, rather than deal with the potential side effects of a biopsy.

Collagenous colitis is also different from ulcerative colitis in that the symptoms are far less pronounced. Both diseases produce an increase in diarrhea as well as abdominal cramps, but most collagenous colitis sufferers don't experience the bloody stools, weight loss, skin lesions, fatigue or anemia that are almost always present with ulcerative colitis. However, with both diseases, the symptoms come and go on a sporadic basis, and there is no way to cure either one.

If you are diagnosed with collagenous colitis, it is doubtful that you will be immediately placed on a treatment regimen. With ulcerative colitis, most patients are started on drug therapy as quickly as possible, but collagenous colitis often resolves itself through simple lifestyle changes. Reducing the amount of fat consumption, eliminating caffeine, increasing the amount of sleep you get, and avoiding aspirin can reduce or even eliminate the symptoms.

If lifestyle changes don't work, however, collagenous colitis sufferers may be given medications to help control symptoms. Drug therapy usually begins with something mild, such as anti-inflammatories, to reduce the damage done to the colon and intestines from increased diarrhea. Patients are also encouraged to take OTC medications such as Imodium to help for short-term relief.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~
profile picture
73monte
Veteran Member
Joined : Mar 2007
Posts : 2030
Posted 3/1/2013 2:01 PM (GMT -7)

coolgirl09:

Right now, she's about to transition onto Remicade. She's been on Imuran for about 3yrs, but they feel that it's not keeping things under control anymore after a recent scope.

Our GI is adamant about Remicade in conjunction with Imuran, although her dosage is to be reduced from 125mgs. down to 50mgs. The reasoning is that they currently believe anti-TNF's with an immunosuppressant, will reduce the liklihood of antibodies.

Just wondering if this sounds familiar in your case? If so, what was the dose of Imuran that you're on?

I certainly hope that your current treatment with Remicade isn't wearing off, esp. if you've been doing so well on it as you have said. I don't have much experience with Entocort, but I believe it's effectiveness is mainly for the inflammation of the TI.

profile picture
coolgirl09
Regular Member
Joined : Sep 2009
Posts : 21
Posted 3/2/2013 7:37 PM (GMT -7)
@73monte--I'm currently on Remicade 8 mg/kg and Imuran 100mg. I've had 3 GIs in the past three years (one of them one of the most highly recognized in the country) and they all have been sort of apathetic about the Imuran. All of them would tell me it would help prevent me from developing the antibodies, but then in the next sentence we'd be talking about the scary T-cell lymphoma or telling me how we needed to "simplify the regimen" (this was when I was pregnant with my daughter) or how I was doing so well maybe I could go off of it in a while. All of the talk about the Imuran made me realize how much of an art treating Crohn's Disease is. Because of that, I make sure I have a GI who listens to me and allows me to have input in treating my disease. I know myself/my pains/my body better than my doc. For instance, i know that right now I'm having pain consistent with inflammation (it's so similar to what I had when I was diagnosed), and so finally the microscopic colitis has been recognized and I'm getting treatment in the form of Entocort (we'll see how it goes!).

My current GI talks about the Imuran as if 100mg is nothing. The Remicade is really what is doing all the work. The Apriso was simply to help prevent colon cancer (guess there's a study that shows that all the 5-ASA drugs combined with folic acid greatly reduce the colon cancer risk). Here's hoping the Entocort kicks all those extra lymphocytes out of my colon!

P.S.--Thanks pb4 for the info on microscopic colitis! Mine was lymphocytic, so I'm thinking that might change a bit how it's treated. Hoping to figure it out soon!

--Rebekah
Dx'ed with CD in 8/2009, Lymphocytic colitis 2/2013
currently on:
Zoloft and Xanax for my craziness
Apriso, Imuran, and Remicade for CD (5mg/kg every 8 weeks)
Starting Entocort for microscopic colitis--here we go!
profile picture
pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 3/2/2013 7:50 PM (GMT -7)
Collagenous colitis and lymphocytic colitis are not related to Crohn's disease or ulcerative colitis, which are more severe forms of inflammatory bowel disease.

Collagenous colitis and lymphocytic colitis are also called microscopic colitis. Microscopic colitis means there is no sign of inflammation on the surface of the colon when viewed with a colonoscopy or flexible sigmoidoscopy two tests that let a doctor look inside your large intestine. Because the inflammation isn’t visible, a biopsy is necessary to make a diagnosis. A doctor performs a biopsy by removing a small piece of tissue from the lining of the intestine during a colonoscopy or flexible sigmoidoscopy.

Some scientists think that collagenous colitis and lymphocytic colitis are the same disease in different stages. The only way to determine which form of colitis a person has is by performing a biopsy.

A diagnosis of collagenous colitis or lymphocytic colitis is made after tissue samples taken during a colonoscopy or flexible sigmoidoscopy are examined with a microscope.

Collagenous colitis is characterized by a larger-than-normal band of protein called collagen inside the lining of the colon. The thickness of the band varies; so several tissue samples from different areas of the colon may need to be examined.

With lymphocytic colitis, tissue samples show an increase of white blood cells, known as lymphocytes, between the cells that line the colon. The collagen is not affected.

Above info from this link...there's more info in the link for you...

http://digestive.niddk.nih.gov/ddiseases/pubs/collagenouscolitis/


bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Post Edited (pb4) : 3/2/2013 7:54:08 PM (GMT-7)

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