Originally thought IBS ,stool test suggests IBD please help

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Jimbo1968
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Originally thought IBS ,stool test suggests IBD please help

Post by Jimbo1968 »

Where do I start , the beginning isn't always an obvious or discrete time . I'll try and be succinct as I really need some feedback from someone with experience.
For a few months I'd been suffering a lot of stress , at around the same time i was prescribed lensoprazole for gerd. I'd also suffered a few random chest pains which according to the hospital was nothing.
About a month ago I was in Paris for a weeks holiday, albeit in an extremely tense and strung out state, suffering a loss of appetite. On the Tuesday night I was admitted with chest and upper back pains to hospital which after tests went undiagnosed (ecg, blood tests , chest x Ray) then came Thursday morning when I got chronic diarrhoea , initially it was soft and became paler and paler in colour, then it became very watery with mucus in it and bit of undigested food, to some extent this lasted for 4 days although not as bad as first day, since then I have watery diarrhea regularly , sometimes once or twice a week, each time I may go once only or several times.
Anyway even when I don't have diarrhea my stools are now a much lighter colour than before , where as they used to me dark brown , they are now either medium or light brown/yellowish.
I had a test done on my stools called a Calprotectin test which was very high and according to my dr was an indication of some form of inflammatory bowel disorder , probably not ulcerative as no blood in stools. I also get a lot of lower abdominal pains / spasms.
Anyway my question to you is does my symptoms sound like any form of Colitis you know, please help thanks Jim
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Post by Leah »

Yes, it could be Microscopic colitis, but the only way to know is to get biopsies done during a colonoscopy. The meds you are taking for GERD may have triggered this. If that's the case, if you stop taking it ( which is hard to do ), the D may stop. For now, you should not eat fibers foods, raw fruits or veggies, or dairy. These foods are very hard to digest with an inflamed gut. Most of us here have to give up gluten. .... but right now, you need a real diagnosis. IBS is NOT a Dx. It's just a way for the doctors to say " I don't know why you gut is acting up"

I am hoping Tex chimes in. Good luck
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tex
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Post by tex »

Hello Jim,

Welcome to the discussion board. The light stool color means that you have increased intestinal motility, simply meaning that the food you eat isn't staying in you nearly as long as it should. But that's typical with diarrhea (D). We often refer to that as rapid transit on this discussion board.

As Leah mentioned, your symptoms match the disease that most of us here are dealing with, namely microscopic colitis. There are at least a dozen different types, but the most common are lymphocytic colitis and collagenous colitis, and these are the only ones that most GI specialists are familiar with. Most people who are familiar with the disease refer to all types as simply microscopic colitis, because the treatment is the same for all types. This name comes from the fact that the only official way to diagnose the disease is by examining under a microscope, biopsy slides of samples taken from the mucosal lining of the colon during a colonoscopy exam.

There's a possibility that you might have an early stage of Crohn's disease (a very high calprotectin test level is typically associated with Crohn's disease) and bleeding has not yet developed, but microscopic colitis is definitely a possibility, also. Therefore, it would probably be a good idea to schedule a colonoscopy exam so that a differential diagnosis can be made, because the treatments are somewhat different, depending on the progress of the disease.

Again, welcome aboard, and please feel free to ask anything.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jimbo1968
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Thankyou

Post by Jimbo1968 »

For some reason I am aware of the possibility of Lansoprazole being a trigger for Colitis, strangely enough I had been on the tablets a few weeks before all this started. I'm 46 and never had any G I problem before, however since this started its never been quite right even on a good day. Many thanks for your prompt response Leah
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tex
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Post by tex »

Jim,

As Leah pointed out, the fact that this happened while you were taking a PPI is relatively strong evidence that you probably have microscopic colitis (MC), because PPIs (and a number of other medications) are notorious for causing MC. They are not known to trigger Crohn's disease or UC, however.

MC is often an iatrogenic disease. IOW it can be caused by a drug prescribed by a physician. Sometimes just stopping the medication will stop the symptoms. But if the symptoms persist for more than a couple of weeks after the use of the medication has been stopped, then the damage is probably permanent, and you will find it necessary to deal with MC for the rest of your life, the way the rest of us here have to do.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jimbo1968
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Thank you for your reply

Post by Jimbo1968 »

Hi Tex thanks for your response.
I was almost expecting it to be the cop out IBS because that is responsive to your state of mind and anxiety , mine have been bad to say the least, however as I understand it microscopic colitis of any variety is not a function of the mind at all. My Calprotectin is 412 which as I understand it is very high.
Just as an aside my mother had colitis , not sure what one or if it was ever defined by doctors just know it wasn't ulcerative, don't know if that would make me more prone to this problem.
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Post by Erica P-G »

Hi Jim,

My Grandmother and Mom (eventually she had a surgery for diverticulitis) both had colitis issues....was never quite sure if LC or CC because no one ever checked it out :???:

The Enterolab results for me clinched the fact that I am Genetic Gluten Intolerant so of course that tells me that I got something handed to me along the way. Being Gluten Free is a must for me now, along with Dairy and Soy free....Egg is up in the air for me until I can figure that out one day.

Keep asking questions!
Cheers
Erica
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Dx LC April 2012 had symptoms since Aug 2007
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tex
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Post by tex »

Jim,

MC is definitely not just due to one's imagination. It's a real disease, and the inflammation in the intestines is real.

However, severe chronic stress is a major prerequisite for the development of MC. With chronic stress, we are at risk of developing MC (if other qualifying conditions are also present). Without chronic stress, MC is unlikely to develop (even when the other qualifying conditions are present).

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jimbo1968
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Keep thinking of new questions

Post by Jimbo1968 »

I really appreciate everyone's feedback. I keep thinking of new questions.
I have tried to cut out many foods and dairy to see if I can better my symptoms , however what I have found is that when I am going to get an attack of D it doesn't seem to matter much what I eat it will happen and that's that, on the other hand I've also noticed that on the odd day that I've been bad with my eating habits it won't automatically get D as a consequence of it.
Also I have many front lower abdominal pains (like spasms) on most days , and pains that go up to just under my ribs both front and back .
Does any of this sound familiar to any of you out there . Thanks Jim
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Post by Betsbrooks »

Jim, I'm a out a year into this, and I remember it being impossible to make connections between different foods and my symptoms until I had been on a very simple diet for months - a diet that eliminated all of the most common problem foods. It is clearer now when I try a new food, although still not always completely clear! After eliminating gluten, dairy, soy, eggs, and eating a few meats, squash, rice and potatoes for months, I am on a much more stable pattern which is more inclined toward constipation. So I really notice it if I try a new food that my gut doesn't like!
Dx CC March 2015
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Post by brandy »

Hi Jimbo,

Welcome!

You may need to cut out gluten and dairy for like 8-12 weeks to see results.

Brandy
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Patricia
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Re: Keep thinking of new questions

Post by Patricia »

Jimbo1968 wrote: Also I have many front lower abdominal pains (like spasms) on most days , and pains that go up to just under my ribs both front and back .
Does any of this sound familiar to any of you out there
Yes, Jim. I had a lot of pain going up under my ribs the first few months after diagnosis. I still get it if I accidentally ingest something I shouldn't when not eating at home, I think for me it is the soy causing it. But it can be any food intolerance causing this. I just had an abdominal ultrasound last week and the ribs were so painful when the technician was probing and trying to get a good image of the gallbladder.

What has helped me the most is the advice on this forum. I eat free of gluten, dairy, soy, and eggs. The biggest difference (in bowel movements) was when I started the elimination diet and after some time slowly added a few foods to it. It is still a very, very simple diet (no resemblance to my former diet). For more information about the elimination diet go on:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732

The safest meat seems to be lamb or turkey. You might want to try that instead of chicken.

Do you have a colonoscopy scheduled? For the diagnosis of microscopic colitis it is very important that multiple biopsies from different parts of the colon are taken, and not just one or two from one part. MC is often patchy and does not need to be present in the entire colon.

Good luck with everything!

Love,
Patricia
Jimbo1968
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Post by Jimbo1968 »

Hi thankyou for your response. I Am yet to see a gastro intestinal doctor, i'm awaiting an appointment. I only have my own Doctors diagnosis based on an elevated stool inflammatory marker and the absence of blood in stool so far. To be honest with you I hope she is right as some of the other alternatives are even less desirable than Microscopic Colitis.
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Re: Thank you for your reply

Post by Tor »

Jimbo1968 wrote: My Calprotectin is 412 which as I understand it is very high.
I think this calprotectin level is low for Crohns and UC, but a bit on the high side for MC. I had half your level at the time of diagnosis for Collagenous colitis, and often the calprotectin isn't raised at all. I think you need a colonoscopy to get tonthe bottom of this. Be sure to tell the gastroenterologist to take at least 6 biopsies of the colon in order to rule MC in or out.

But you're right, calprotectin levels above 50 are strongly indicative of IBD, not IBS.

-- Tor
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tex
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Post by tex »

Jim wrote:however what I have found is that when I am going to get an attack of D it doesn't seem to matter much what I eat it will happen and that's that, on the other hand I've also noticed that on the odd day that I've been bad with my eating habits it won't automatically get D as a consequence of it.
Betsy, Brandy, and Patricia are right on target. Your experience (not being able to detect any food reactions) is very typical of untreated gluten sensitivity. For most of us, it takes months of avoiding gluten 100 % before antibody levels will decline enough that our immune system will begin to perform semi-normally again. Until then, the anti-gliadin antibodies associated with a gluten sensitivity will dominate the immune system, regardless of what we eat. The half-life of anti-gliadin antibodies is 120 days, so it's no wonder that gluten dominates food reactions on a long-term basis.

I had exactly the same experience with foods in my diet. But after I had totally avoided gluten for a few months, then I began to be able to see a difference in how I reacted to all of the other foods that were causing me to react. And after my gut had healed from some of the gluten damage, and I cut all of the suspect foods out of my diet, my symptoms stopped. For many of us, gluten has to go, and some healing has to take place, before we are able to tell anything about food sensitivities in our diet. Gluten trumps everything.

All of the aches and pains (and many more) are very common with MC.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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