intestines too fragile for colonoscopy!

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Hopeful
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intestines too fragile for colonoscopy!

Post by Hopeful »

Yikes! I saw my new GI doctor today and we went over all my medical records. I am 65 and have had 4 colonoscopies since my 40"s (mom died of colon cancer - age 45).
I showed him the pics from my former doctor indicating a tear in the intestinal wall. And then told him how painful colonoscopies are for me unless I'm fully anesthetized. I have adhesions from 2 C-sections that make passage of the scope very difficult and painful. He said that the tear could have progressed to a full perforation - I was lucky - these can happen despite a doctor's best efforts when one has a "difficult" colon.
So then I told him about my Mixed Connective Tissue Disorder and he said that probably explains the fragility of my intestines. It may get worse as I age.
Since I have only had one polyp (benign) removed in all those colonoscopies, he advises waiting for the 10 year mark between procedures. This scares me a little with my mom's colon cancer, but I think he's right.

Has anyone else had any experience with this? Since I know many of you have AI and connective tissue issues, wondering what your experience is?

By the way, he had heard of Enterolab testing, looked at my results, heard my story on dietary-based remission and was just fine with it. He said humans don't need gluten, dairy, or soy to maintain a healthy diet. So, that was refreshing!
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Post by Lilja »

Hi Hopeful,

Glad to hear that you have an open minded doctor.

I suffered a lot when I had my colonoscopies, and the latest two stated: No 1 Collagenous Colitis and no 2 (four years after): Three benign polyps and no trace of CC.

He said that I would be automatically called in to a new colonoscopy in 3 years, given the polyps.

I won't take more colonoscopies. The preparations are awful, the colonoscopy in itself is so hurtful that I cried out loud last time, and they can't offer me anything but medication no matter what they find. And I suspect that the scope does harm to my intestines, last time I could watch the monitor and I saw what I would consider a lot of fresh blood, that must have come from the scoping. "Nothing to worry about", was the gastroentorologist's comment...

Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hopeful
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Post by Hopeful »

How could it possibly be good for our intestines to be torn up and bleeding from these procedures! It seems to fly in the face of all the slow and careful healing that we are trying to accomplish...
Chris
Lilja
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Post by Lilja »

Chris,

Exactly. Here we sacrifice everything and our whole time and attention to heal our guts, and the scope tears it up. Makes no sense.

Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
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tex
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Post by tex »

I can vouch for what Lilia mentioned about the delicate mucosal lining of the intestines. I have an ileostomy, and so I wear w 2-piece appliance. Whenever I change the pouch, it's necessary to wipe off the flange of the body seal with a piece of toilet tissue before attaching the pouch. With an ileostomy, the stoma that slightly protrudes from the surface of the abdomen is actually the inside of the intestine at whatever point the intestine was severed. All it takes to draw a little blood is to accidentally wipe the surface of the mucosa with the soft tissue. I've never seen it bleed because of the normal passage of stool, but if I touch it (even with soft tissue), it bleeds. A scope has to be relatively rough on it. Of course I'm talking about the small intestine here, which is probably more delicate than the colon. I doubt that the colon was originally designed for the passage of metal objects, though. :roll:

That said, I didn't notice any indications of bleeding on the monitor during my colonoscopy. Of course, the scope was always progressing forward. I don't recall if I even watched the screen during the withdrawal process.

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.
Hopeful
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Post by Hopeful »

Tex, given my family history, should I be worried about a ten year interval between scopes?

You've been monitoring this forum for many years, do you notice that colonoscopy problems are common?

Chris
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Post by Gabes-Apg »

Chris
isnt there other options to check for colon cancer?
feacal testing? pill cam?
Gabes Ryan

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tex
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Post by tex »

Chris wrote:Tex, given my family history, should I be worried about a ten year interval between scopes?

You've been monitoring this forum for many years, do you notice that colonoscopy problems are common?
Unless you are on an immunosuppressant (especially one of the Anti-TNF drugs), the risk is low. The problem with using the Anti-TNF drugs is that if malignant cells somehow get started, they grow very quickly and the problem can get out of hand in a hurry (because the immune system is disabled).

Cancer, like AI diseases, is a product of chronic inflammation. Untreated MC boosts the risk of CRC because of the chronic inflammation. Since virtually everyone who is a member of this discussion board controls (or at least significantly limits) inflammation by avoiding the foods and drugs that cause the inflammation, my take is that the risk is very low. I don't recall anyone posting that they developed CRC after their diagnosis (assuming that they made the necessary diet changes to limit the inflammation.

Another important consideration is vitamin D level. Low (or minimally-sufficient) vitamin D levels seem to be associated with a much higher risk of the development of polyps. Our cumulative experience on this discussion board suggests that a higher than normal vitamin D blood level reduces the risk of the development of polyps.

Research shows that vitamin D reduces the risk of CRC, and IMO this occurs because vitamin D seems to drastically reduce the risk of developing polyps. I base this on actual case reports here on this board from members whose previous coionoscopies regularly discovered polyps. After boosting their vitamin D levels, the same individuals reported no more polyps (or far fewer) on subsequent cononoscopy exams.

I hear you about fragile intestines. Prior surgeries cause the development of adhesions, and IBDs weaken intestinal structural integrity. I had abdominal surgery in 2005. When I again had to undergo emergency abdominal surgery about 5 years later, my guts had developed many adhesions, and they were described as "friable" (meaning brittle or fragile) in the operative report. While the surgical team was "mobilizing" (freeing up from all the adhesions) my small intestine, they actually ripped my intestines in numerous places, and had to make a lot of repairs in order to salvage it. It was touch and go for a while, but apparently they did a decent job, because I managed to survive. :grin:

You might be interested in this test kit that does not require any invasive procedures. It became available a little over a year ago. It's not cheap, but as far as I am aware, it works reasonably well. Apparently medicare will pay for it (especially if your GI doc specifies that a colonoscopy exam would be risky), but private insurers may not pay for it (yet). Medicare might possibly pay for it annually for someone who has a risk history.

\New Home Test For Colon Cancer Now Available

Interestingly, some years ago Dr. Fine (of EnteroLab) stopped doing colonoscopies when trying to diagnose or rule out MC, and began using sigmoidoscopies instead, because his research showed that insufflation (pumping gas into the colon during colonoscopy exams in order to make the lumen easier to scrutinize) tends to cause minor "surface splitting" in the colon walls.

http://www.finerhealth.com/Educational_ ... c_Colitis/

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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Post by HappyBird »

Hopeful wrote:How could it possibly be good for our intestines to be torn up and bleeding from these procedures! It seems to fly in the face of all the slow and careful healing that we are trying to accomplish...
Chris
I totally agree with you!

I had a colonoscopy in November 2014 and less than a year later another was suggested. I refused point blank on the grounds the preparation was far too amaging and I was very fragile and ill during a full blown flare. I sometimes wish nurses and doctors could experience these procedures before being allowed to prescribe them - they would be ordered fas less. I don't care - no more clonoscopies for me, they do more damage than the diagnosis is worth. My colonoscopy was a waste - no biopsies were taken and I was uncomfortable and sore for three months, then developed the mother of all flares.
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Hopeful
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Post by Hopeful »

Here is a pretty good synopsis of colon cancer detection methods.
http://www.cancer.gov/types/colorectal/ ... fact-sheet

It looks like there are some decent alternatives to colonoscopy, which is good to know. Since it has only been 4 yrs. since my last one, I think I'm good to go for a while longer, at least.

Thanks for the good information and support, everyone!
chris
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tex
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Post by tex »

Chris,

Thanks for the link. I noticed that page was last updated over 14 months ago, so I looked up a more up-to-date medicare status for the Cologard test. Sure enough, it's approved for use by medicare once every 3 years. Note that it's available by prescription only.

Cutting-edge colorectal cancer screening now covered

But here's the catch. Patients must meet all 3 of these conditions:


1 Between 50 and 85 years old

2 Show no signs or symptoms of colorectal disease including, but not limited to, lower gastrointestinal pain, blood in stool, positive guaiac fecal occult blood test or fecal immunochemical test, and

3 At average risk of developing colorectal cancer—have no personal history of adenomatous polyps, colorectal cancer, or inflammatory bowel disease, including Crohn’s Disease and ulcerative colitis; and have no family history of colorectal cancers or adenomatous polyps, familial adenomatous polyposis, or hereditary nonpolyposis colorectal cancer


Catch number 3 kinda makes the fact that medicare recognizes it a moot point for most people who might benefit from the test the most. :sigh:

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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Post by Joefnh »

One option is to have a 'virtual' colonoscopy, meaning they image your intestinal tract with an MRI (magnetic resonance imaging) scan with and without a certain type of contrast agent they give you in your IV.

This past summer I had my sigmoid colon removed, as it has perforated, which ruled out a pre-op colonoscopy. The MRI virtual colonoscopy was run. I asked to see some of the images and they were fairly impressive in detail. I'm sure a scan like that costs more than a standard colonoscopy, but in cases where they cannot proceed normally it does provide a good options do I would imagine insurance would cover it.
Joe
Hopeful
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Post by Hopeful »

Well, shoot. So the Cologard test is out for me. You're right, Tex - figures it would exclude a large % of the population that needs to get screened!

I will inquire about the virtual colonoscopy the next time I see the doc.
Chris
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