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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ethelred | @ethelred | Jun 5, 2023

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!

researchmaven | @researchmaven | Jun 5, 2023

In reply to @jkarmazin "I have not used a massager, but I do manual massage on my belly every morning!..." + (show)

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:

jkarmazin | @jkarmazin | Jun 4, 2023

In reply to @jaleh "I have had problems with my digestion since I was 20. I still do. Has anyone..." + (show)

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

jaleh | @jaleh | Jun 2, 2023

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.

jkarmazin | @jkarmazin | May 27, 2023

In reply to @marmoldav "Hello. I just had my first colonoscopy and the report on it says I have a..." + (show)

I too have redundant and tortuous colon and IBS-C. I used Miralax for 10 years and added Citrecil for 5 years during that time. Don’t like Miralax as I have a weak sphincter. After my last colonoscopy had several months of issues with not being able to eat, nausea, loose stools. Staying away for Dairy helped. But started trying Magnesium. Magnesium Citrate was to harsh for me so my Dr. Recommended SLO- Mag. That is working better for me. Now I am adding some fiber, trying benefiber but not sure it is helping either. Also taking nortriptolyn for the the IBS symptoms and the gut brain issue. Not perfect yet, but an improvement. Gaining some weight again.

erinjoy13 | @erinjoy13 | May 27, 2023

In reply to @marmoldav "And I just purchased a squatty potty lol." + (show)

@marmoldav me too! I love it.:)

researchmaven | @researchmaven | May 25, 2023

In reply to @dedhambeth "I have the lovely tortuous redundant colon, too. I have found two things that seem to..." + (show)

What is your intermittent fasting schedule?

I assume you maintaining a healthy weight.

When I need a change, I will try the Metamucil capsules. Does the powder work for you too and you simply opt for the convenience of capsules?

sallyw133 | @sallyw133 | May 25, 2023

In reply to @marmoldav "Hello. I just had my first colonoscopy and the report on it says I have a..." + (show)

My gi says that mineral oil is benign and fine to use. Though you would assume Smooth Move tea would be gentle, it actually is much stronger than the Senoket tablets, especially if you steep it 15 minutes as directed. Not surprised at your result. A low fiber diet is also advised. Sounds like you are doing all the right things! Glad they are working for you!

dedhambeth | @dedhambeth | May 25, 2023

In reply to @researchmaven "Hi there, Miralax doesn't work for me and makes me nauseous. Smooth Move tea is fairly..." + (show)

I have the lovely tortuous redundant colon, too. I have found two things that seem to work. I take two Metamucil capsules with a big mug of water first thing in the morning. Then I follow my Intermittent Fasting program. It has been great. I also try not to eat huge amounts at any meal. It isn’t perfect but it makes life a lot better.

researchmaven | @researchmaven | May 24, 2023

In reply to @dianesgk "I too have a torturous . Showed up on my last 2 colonoscopies, 2021 and 2023...." + (show)

Hi there,

Miralax doesn't work for me and makes me nauseous. Smooth Move tea is fairly harsh on my system. Heating pads and massage of my sigmoid colon (left side) helps me.

Eating too much isn't good for me nor is being short-changed on sleep.

I have just tried an old-timely cure for constipation that I read about in a Harvard Health post. One tablespoon of mineral oil (a laxative) after lunch. It has worked twice to "move things along" that were stuck and seems to be gentle on my system with no mishaps. I also could not find negatives for its occasional use in studies and posts. I will continue trying it.

I feel that with my redundant colon, I will always need a home treatment that works for me.

(BTW, I also have IBS-C and must eat a mostly zero or trace FODMAP diet to manage that piece. I am being tested for SIBO, though SIBO is more connected to IBS-D. None of this helps my redundant colon, of course. It seems a crazy mix.)