Anyone else have a Redundant / Tortuous Colon?

Posted by onaquest @onaquest, Nov 7, 2018

Hello. Anyone else out there that has a redundant/ tortured colon? I was diagnosed with this a few years ago. I’m usually ok, but if I get constipated, I get sick for a week or two. Last year my gastroenterologist referred me to a surgeon for urgent surgery to remove some of my colon. The surgeon I ended up seeing (not on the recommended list by my gastro doc due to others not available for a long time) said he believed I could live with the redundant colon if I followed a low FODMAP diet. I tried the diet religiously, scientifically (I’m a scientist), and I found it’s not the food I eat that causes these bouts of constipation. The only item I’ve found that might cause the bouts is coffee every day. An occasional coffee seems fine. What has helped me stay regular in a big way is Benefiber (or any pure wheat dextrose generic) three times per day. Lots of fluid.

My gastro doc was upset with the surgeon and said I’d regret not having the surgery. He fears I will end up in an emergency situation. I have searched the Mayo site and don’t find anything about redundant/ tortured colon. Are any Mayo docs doing research or treat this condition? Anyone else suffer from this too?
Thank you! -Jayne

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Hello,
Just back from a colonoscopy that practically didn't happen, and found this site that I hope may shed some light on my situation. This was my 2nd ever colonoscopy, first when 50 and todays at 59. Different doctors. Have family history of colon cancer, Mother passed at 60 and sister dx at 61 who was treated and is now cancer free. Todays colonoscopy was aborted due to redundant colon. Never knew I had this dx. Anyone know if a colon can become redundant over time, or would it have had to be redundant at first (successful) colonoscopy? A barium test was suggested for next screening attempt, which I believe will be in a couple of weeks or thereabouts, but on reading about that , it doesn't seem as reliable in finding all potential polyps. Anyone with a dx of redundant colon go on to have a successful colonoscopy or what measures were taken to ensure full colon was screened for cancer? TIA

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I have had several successful colonoscopy's before my last one, when I was diagnosed with a redundant, ridged, fixed colon. So yes, a redundant colon can be caused over time. I'm assuming your constipated a lot. It's the constipation that causes your colon to lengthen to hold all the waste. Mine too went from fine, to not so fine. :o( When I had my last colonoscopy they used a children's size scope. You could ask if that would work for you. It still was difficult and took them a long time. Hopefully, that could be an answer for you. Good luck!

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@fifibee

Hello,
Just back from a colonoscopy that practically didn't happen, and found this site that I hope may shed some light on my situation. This was my 2nd ever colonoscopy, first when 50 and todays at 59. Different doctors. Have family history of colon cancer, Mother passed at 60 and sister dx at 61 who was treated and is now cancer free. Todays colonoscopy was aborted due to redundant colon. Never knew I had this dx. Anyone know if a colon can become redundant over time, or would it have had to be redundant at first (successful) colonoscopy? A barium test was suggested for next screening attempt, which I believe will be in a couple of weeks or thereabouts, but on reading about that , it doesn't seem as reliable in finding all potential polyps. Anyone with a dx of redundant colon go on to have a successful colonoscopy or what measures were taken to ensure full colon was screened for cancer? TIA

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A CT colonography will find polyps.

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Me. My first colonoscopy in 2006 was incomplete bc of "very redundant sigmoid colon." My third colonoscopy doc told me my "right colon" was redundant and that I have a short rectum. I have had severe constipation for 19 years. Doctors fob me off for pelvic floor PT, various fiber and miralax regimens, and most recently I paid $1500 for three PT visits to train my anal sphincter to relax. I'm aces at relaxing it but there's slow transit, so a relaxed anus doesn't do much but wait.....and wait.....and wait.

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@fighter

I don't know what I have really, but my old gastro told me I had an extra long colon. About 2 years ago my gut changed. Long story short I did try to Fodmap diet, but really didn't think too many foods are the culprit. I, too, have had chronic constipation, since I was a kid. I did try Linzess, and it was working, but then stopped. Magnesium 400 mg does nothing for me. I did a Fleet enema once, which really didn't work, and made me sick--legs shaking & felt like I was going to pass out. I was taking 3 Citrucel tablets a day, but that doesn't do much of anything. I think I took benefiter, metamucil in the past as well. Now I take Senokot-S every few days, which helps. My old gastro told me to buy Atrantil off the web. I took that for quite some time, and I believe it did help with my bloating. Might be something others could try for bloating & gas.

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Like you, I have tried all sorts of things that work initially and then just don't work at all. Trulance was one thing, and psyllium fiber alternating with miralax was the other. Mkralax turns everything to toothpaste and there's always the urgency as a result. The endless wiping... and that is no way to live!

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@shayshay

Causes back pain too.

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Indeed! Low back is howling right now due to all that waste packed into my narrow pelvis.

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@virginia44

Kris, thanks for the info. I had a discussion on another thread about how going off of estrogen replacement effects the mucosa in the colon. I also researched it online, and there are a couple of solid studies on it. My problems started right about the time my doc took me off estrogen. I've had a tortuous colon since at least 2008, but problems just started 2 years ago...exactly when I went off estrogen. Going to ask the doc to let me go back on estrogen cream, at least.

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This makes me wonder if Femara is making my Tzc and IBS-C so much more severe. Femara prevents my body from making estrogen by aromatase conversion.

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@carcar

Is this the same condition as Diverticulitis?

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No, tortuous colon is extra loops and lengths of colon. Diverticulitis is pockets along the colon that fill with seeds or popcorn kernels and get inflamed. And I saw a small study that showed that TC and diverticulitis rarely occur in the same person, but on this board I have seen several people say they have both.

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I also have long torturous colon. GI surgeon noted “the colonoscopy was technically difficult & complex due to restricted mobility, a redundant colon, significant looping & a torturous colon”.
That was in ‘18.
They referred to patient (me) with severe systemic disease...doesn’t sound promising .

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@sickofbeinsick1

I also have long torturous colon. GI surgeon noted “the colonoscopy was technically difficult & complex due to restricted mobility, a redundant colon, significant looping & a torturous colon”.
That was in ‘18.
They referred to patient (me) with severe systemic disease...doesn’t sound promising .

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Well that's not very nice. I don't think a long colon is a systemic disease. Do you have diabetes or heart disease or Crohn's or UC?

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