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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I was just diagnosed with a tortuous colon with a redundant transverse colon. I have had issues since I was a teen with severe abdominal pain, bloating, and constipation. Early on the severe episodes were infrequent and I seldom sought medical attention. Around 20 years ago it started getting much worse and with more frequent severe episodes. These ones were so painful that they would cause me to have symptoms of shock. I would usually vomit from the pain.
Over the last 10 years I had a 5 day NPO hospital stay that ended eventually with a polypectomy to remove one that was infected. That was my first colonoscopy. In the years since I have had 2 more by a different gastroenterologist. My 4th and most recent was yet another doctor who couldn’t visualize the entire colon because she couldn’t insert an adult scope the full length. I am 51 years old and female by the way. This time she ordered a sonogram and a barium X-ray that identified the problem that has made me pretty miserable for so long. Thank goodness. What I wonder is why this took so long? Why didn’t previous colonoscopies lead to this diagnosis?

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@pandorahjb

I was just diagnosed with a tortuous colon with a redundant transverse colon. I have had issues since I was a teen with severe abdominal pain, bloating, and constipation. Early on the severe episodes were infrequent and I seldom sought medical attention. Around 20 years ago it started getting much worse and with more frequent severe episodes. These ones were so painful that they would cause me to have symptoms of shock. I would usually vomit from the pain.
Over the last 10 years I had a 5 day NPO hospital stay that ended eventually with a polypectomy to remove one that was infected. That was my first colonoscopy. In the years since I have had 2 more by a different gastroenterologist. My 4th and most recent was yet another doctor who couldn’t visualize the entire colon because she couldn’t insert an adult scope the full length. I am 51 years old and female by the way. This time she ordered a sonogram and a barium X-ray that identified the problem that has made me pretty miserable for so long. Thank goodness. What I wonder is why this took so long? Why didn’t previous colonoscopies lead to this diagnosis?

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I should add I have previously been diagnosed with IBS with constipation, GERD, a diverticula, and recently bile sludge and non-alcoholic fatty liver.

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I have had problems with my digestion since I was 20. I still do. Has anyone here tried a massager for stomach to relieve constipation? Has anyone heard of MoWoot? Especially with redundant colon, the massage may help?
https://www.mowoot.com/en/
I am not sure if I can get it, if it works it's worth it for me to get it.

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@jaleh

I have had problems with my digestion since I was 20. I still do. Has anyone here tried a massager for stomach to relieve constipation? Has anyone heard of MoWoot? Especially with redundant colon, the massage may help?
https://www.mowoot.com/en/
I am not sure if I can get it, if it works it's worth it for me to get it.

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I have not used a massager, but I do manual massage on my belly every morning! And is does help.

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@jkarmazin

I have not used a massager, but I do manual massage on my belly every morning! And is does help.

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My son found a manual massage guide from England's National Health Service. Compared to US medicine which is drug and procedure-focused, NHS seems to focus on what one can do at home.

I do them every day, usually at bedtime. I feel better afterwards and I think they really help!

https://www.wchc.nhs.uk/resources/self-abdominal-massage/

Here is the link:

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Yes, I have that same diagnosis too now 14 years back from my only colonoscopy which was incomplete. It comes up now again only because I am supposed to have another to qualify to be a kidney donor. I am looking for a genius doctor who has conquered techniques of completing at least 90% of incomplete colonoscopies.

The only other symptom I have is a very occasional passing of mild pain across my abdominal, maybe a couple time a year. That is it. Have travelled/ lived in India, Pakistan, Peru, Mexico, and such too many times to count the number of countries, and have never given it a thought.

After the only colonoscopy I researched deeply and discovered that this is an identifiable problem in Sweden. Not long ago my daughter figured that between her and her dad’s statistics, I must be 12% Swedish. No wonder that I love Scandinavia!! Apparently it is more common there. People who died from other causes with undiagnosed and untreated redundant colon were discovered with it. I rested my own case when the doctor who could not continue to the cecum prescribe a barium enema and who told me that if I was carrying a polyp he would operate. He could not offer me a single statistic in spite of his absolutely overflowing and cramped waiting room.

I am now a 73-year-old female with no new symptoms. I have no advice and believe in free choice and informed consent and have much too much contact with the medical world because of familial loss of kidney function. There are bad doctors.

Bravo Mayo! Another family member has survived 12 years and 2 transplants with Amyloidosis!

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@researchmaven

My son found a manual massage guide from England's National Health Service. Compared to US medicine which is drug and procedure-focused, NHS seems to focus on what one can do at home.

I do them every day, usually at bedtime. I feel better afterwards and I think they really help!

https://www.wchc.nhs.uk/resources/self-abdominal-massage/

Here is the link:

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I found some abdominal massage videos on You Tube , and do them regularly. It helps. Your pamphlet from the NHS looks terrific….will try this system, which appears to be very thorough. Thank you!

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Hi. I have the same issue. I eat healthy, drink water, exercise, walk and practice yoga. I'm only 5'2" and have the longest colon with many twists and turns. I can't have a colonoscopy because if this. I usually do well if I stick to my routine at home. I think I get triggered from stress and traveling. Chia seeds work well for me. I've tried all the remedies the docs prescribe. None of them work. I take a magnesium supplement (magnesium oxide) also. Magnesium citrate doesn't work for me.

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I too have a redundant/tortuous colon. I get so tired of trying to get people to understand why I eat the way I do and why a laxative or whatever doesn't work for me - but you look so good(they say!) This all started after my appendectomy when I was 9. By 16 I was covered with abdominal adhesions and had emergency surgery resulting in a too long and twisted colon. Add on 3 more surgeries for Ovarian Cancer and a colonoscopy diagnosing a tortuous colon. After my last surgery in 2016 (8 hours of cutting out scar tissue & cancer) my gynecologic oncologist said "no more colonoscopies or surgeries, it's too dangerous." I have tried it all: hi fiber/low fiber, no flour products, no meat and everything on the market including prescription (Linzess was a total failure). I also have chemo induced peripheral neuropathy in my whole body. I exercise daily. Since 2014 I have lost 30 pounds and medical documents identify me as having anorexia (not anorexic). Gastroenterologists ask, "What do you want me to do, look at your medical history." So, yes, I have a redundant/ tortuous colon. I can't travel and I only eat salads (occasional soup) when we go out to eat. I get so excited on days I don't have to use a suppository or an enema and actually have a bowel movement on my own:)
Seems like I've said too much. It is good to know that others have these problems.

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I just read I have one too. Any tips ? 44 M

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