If the damage occurs in the colon, why does my stomach hurt?

Sue777 · Post by **Sue777** » Sat Jul 07, 2012 9:07 pm

I'm confused. I've had CC for about 8 years but for some reason never really thought about this before and now I am trying to find an answer. My flare up is starting to get better.... it's like two steps forward / one step backward. I'm slowly experimenting with adding some "dangerous" foods back in to see what I can tolerate and what I can't, and found out today that I'm not ready for lettuce yet. I've spent the past hour mostly in the bathroom and with severe stomach pains (which is typical after eating a forbidden food) but out of desperation I grabbed a bottle of Pepto that has been in our fridge for years (back from when my son used to live at home) and took a swig of it. Almost immediately, the stomach pain was gone. I'm thrilled, but I'm confused. There is no way the Pepto got to my colon yet .... but as soon as it hit my stomach the pain stopped. So do I have something else going on, or does CC cause the stomach pain?

I'm probably over-thinking this and trying too hard to analyze it, but that's what I do. Would love to hear why the pain from the salad that I'm assuming was too tough on my colon is being so quickly resolved in my stomach?
Sue

Post by **tex** » Sun Jul 08, 2012 8:22 am

Hi Sue,

It's not just your imagination. Although most GI docs seem totally oblivious of this, most of us have not only colon inflammation, but also small intestinal inflammation, and a significant percentage of us also have stomach (gastric) inflammation. Some even have esophageal inflammation associated with their MC. I found reams of information on this aspect of MC while looking up references for the book. Why most doctors are unaware of it, I can only guess. Presumably, they're just not interested enough in the disease to bother to try to learn more about it. They're probably hoping that their drug company reps will bring them up to date on the disease, just as they do for most of the more "popular" diseases. LOL.

Tex

Sue777 · Post by **Sue777** » Sun Jul 08, 2012 8:55 am

Thanks, Tex. I'm not sure why my collagen bands are causing stomach pain, but I'm not a doctor nor do I portray one on television. Then again, as you said, even the ones who ARE doctors probably can't answer my question so I'll just add that to my list of things I'm learning about this disease (and my body) that I haven't learned from the doctor.

I have a follow up visit with the GI in a couple of weeks to see how I'm doing with my flare up so I'll ask him the question. Should be amusing to hear his answer.
Sue

Post by **tex** » Sun Jul 08, 2012 12:37 pm

Hi Sue,

I discuss all this stuff in my book, and IMO, all these similar diseases (with different names), such as collagenous gastritis and collagenous sprue are simply alternate presentations of CC. The doctors and researchers simply don't know how to classify them. I have a hunch they are much more common than the medical community realizes, they just never look for them (like MC, these diseases can't be diagnosed if they aren't specifically tested for, and very rarely are stomach biopsies taken during routine endoscopy exams, for example).

http://www.archivesofpathology.org/doi/ ... 2.0.CO%3B2

http://www.sciencedirect.com/science/ar ... 6509013329

Tex

Leah · Post by **Leah** » Sun Jul 08, 2012 12:58 pm

Hi Sue. The way I look at it is that some of the foods we eat cause inflammation- in more than one place, but the collagen bands is what makes the colon kind of inflexible and dense- which in turn makes it difficult for the colon to absorb the water ( which is it's job) before the waste moves on. Is that correct Tex?

Leah

Christine. · Post by **Christine.** » Sun Jul 08, 2012 4:56 pm

Well for Pete sake Tex....the little book previews are teasers for sure, but I am hoping the real deal will be published and available soon. I need multiple copies for friends and family that really need to read it. (including me).
Christine

Sue777 · Post by **Sue777** » Sun Jul 08, 2012 6:46 pm

Christine. wrote:Well for Pete sake Tex....the little book previews are teasers for sure, but I am hoping the real deal will be published and available soon. I need multiple copies for friends and family that really need to read it. (including me).
Christine

Yep, Tex really knows how to tease the ladies, doesn't he? :cool:

Sheila · Post by **Sheila** » Sun Jul 08, 2012 7:37 pm

Very, very interesting Tex. You mention esophageal issues connected with MC. Could esophageal spasm be part of this disease? In my birth family every one of us, four people, have/had issues with esophageal spasm. My mother and I are the only ones with MC and she probably had celiac too but wasn't diagnosed.

Thanks,
Sheila W

Deanna in CO · Post by **Deanna in CO** » Sun Jul 08, 2012 8:49 pm

Sue,

You know, the longer I'm on this list, and the more I learn about this disease, the more it seems true that MC generally affects the entire digestive system. So many of us have esophageal, stomach, small intestine, as well as colon issues. When I went to see Dr. Lewey in Colorado Springs (one of the few doctors who DOES seem to know something about MC), he did not recommend repeating the colonoscopy and biopsies I had had a few months earlier, but he DID recommend an endoscopy with biopsies. My insurance wouldn't pay for him to do the endoscopy, but the doctor who did it found a) a hiatal hernia, and b) patches of stomach tissue in my esophagus (the biopsy showed it wasn't Barrett's, but something sort of similar). The hernia is what was giving me pain; taking Betaine HCl took care of the pain though the hernia is apparently still there since I still have pain when I don't take it.

All that to say, though I never had significant digestive issues before the MC, I definitely have issues all the way through now. The collagen bands in your intestines probably aren't causing your stomach pain, but the inflammation that caused the collagen bands in your intestines may also be present in your stomach and may be causing you pain there.

Deanna

Post by **tex** » Sun Jul 08, 2012 9:52 pm

Leah wrote:The way I look at it is that some of the foods we eat cause inflammation- in more than one place, but the collagen bands is what makes the colon kind of inflexible and dense- which in turn makes it difficult for the colon to absorb the water ( which is it's job) before the waste moves on. Is that correct Tex?

Collagen is connective tissue, and the thickening seen in CC probably does make the walls of the colon less flexible. I have no idea whether or not it interferes with water recycling, but it's certainly possible that it might. Note that the clinical symptoms are the same for patients with LC, and they have normal collagen band thickness.

Sheila wrote:You mention esophageal issues connected with MC. Could esophageal spasm be part of this disease? In my birth family every one of us, four people, have/had issues with esophageal spasm. My mother and I are the only ones with MC and she probably had celiac too but wasn't diagnosed.

I'm not very familiar with esophageal spasm, but since it is considered to be a motility disorder, it's certainly possible that it could be associated with MC. Also, many cases are blamed on GERD, and GERD seems to be associated with MC (for many of us).

OK, I'll make an effort to stop mentioning the book until after it's finished.

Tex

draperygoddess · Post by **draperygoddess** » Mon Jul 09, 2012 7:38 am

I agree that the inflammation must be throughout the digestive tract--why would it contain itself to the colon? My reactions to some foods are way too fast to be from the colon--30 minutes or less. (As a matter of fact, MOST of my reactions are that fast.)

Sue777 · Post by **Sue777** » Mon Jul 09, 2012 8:57 am

draperygoddess wrote:I agree that the inflammation must be throughout the digestive tract--why would it contain itself to the colon? My reactions to some foods are way too fast to be from the colon--30 minutes or less. (As a matter of fact, MOST of my reactions are that fast.)

Mine, too..... 30 minutes and often MUCH quicker than that. My husband always looks at me very puzzled when he sees me eat something and then do my "Uh oh!" and mad dash to the bathroom..... he has commented that it's hard to fathom how something I eat can have a negative effect on my that quickly. Puzzles me, too, but I know for a fact that it happens.
Sue

Deb · Post by **Deb** » Mon Jul 09, 2012 5:47 pm

Tex, can we do a poll on esophageal spasms? I first noticed them a couple of years ago (maybe with the onset of the MC?). Mine is worst in the morning, especially if I start the day with protein. I have found that if I drink some water when it happens I can alleviate the symptoms and am usually okay for the rest of the day.

http://www.mayoclinic.com/health/esopha ... ms/DS00763

Post by **tex** » Mon Jul 09, 2012 7:33 pm

Deb,

Sure -- I gather you're asking me to set one up. OK, will do.

Tex

Deb · Post by **Deb** » Tue Jul 10, 2012 5:37 am

Thanks Tex. Can we set up polls here ourselves?