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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@thinkfirst20020

I just learned I too have a "a tortuous colon" after having a routine colonoscopy. I've also been told (long ago) I ahve a "tilted pelvis" ; something exercise also does not change. I am very short-waisted and short (5'2) as well. I am wondering if those of us who are short waisted are at an increased risk for having "a tortuous colon". No matter how in shape I am and how little I weight, I can't reduced my waist. I buldge a bit where I have a lateral c-section scar. Yet, I run and do other exercises, eat well, maintain a low body weight, etc. Yet have what looks like a flabby abdomen. I am wondering if my being short waisted and short contributes. Seems like it world. How about others with " tortuous colon" any very tall people have a tortuous colon?

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It may be one possibility. I’m not short waisted though and was not told this after a previous colonoscopy, nor did I feel the effects until shortly before this last one.
I believe this was caused by the incessant powders a functional dr had prescribed. Even when I reported the concerns, she did not wish to change the protocol and attributed the situation to other possibilities, sending me to other drs. Although I stopped her specific protocols when it didn’t appear she was listening, the damage was done.
So I believe there are different reasons for this to evolve.

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I was diagnosed in May of 2021 after a routine colonoscopy and never had problems until October of 2022. For the next year - it changed my life. I was experiencing periodic severe diarrhea which went on for months. Six months later after the second colonoscopy I was told I had a "severely" tortuous and redundant colon. Laxatives and fiber never really helped bring any normalcy back to my life and I did not like taking them, especially long term. I did not want to be dependent on them. I tried drinking more and increasing fiber which I have since decided were not the right choices for me. My only problem is what I stated above. To my knowledge I do not have any other digestive/colon issues. Why would I want to put more fiber into a system that has problems eliminating daily and has more places for it to hide or stick around longer. I decided to try a product I saw on Facebook, Emma. If you want, check it out. Be sure to check all the ingredients. I am sure it is not for everyone. But for me it has made a real difference. I am able to go daily, easier, and less gas. I did also contact the company with my specific problem and asked when should I be taking it and can I take more that 2 pills a day. I received a prompt response which has been helpful in my situation. I can take up to 4, but by adding gradually. I should be taking it with 8 ounces of water "after" a meal. Good to know. I have never taken 4 but on occasion I have take one extra capsule. I was choosing to use Smooth Move Tea about once a month, if needed but I hope that won't be necessary now. I have been taking Emma since the middle of October. Healing takes time and healing won't make the tortuous redundant colon go away but hopefully the real problem won't control my daily activities and I will feel confident to go out and do things again. Occasionally I still get pain in the center of my abdomen right under my rib cage that feels like something is stuck or having difficulty moving so I use heat and massage to help. But it is not nearly as often as before. Eating smaller meals is also helpful for me, especially in the evening. Maybe this will help someone.

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For those that seek surgery, surgeons don’t want to do a colon resection as it can make thing worse with additional adhesions. I have two meshes so surgeons really don’t want to attempt surgery. I can’t find a surgeon with the expertise to perform the needed surgery. The Mayo Clinic won’t take me as my insurance is not in my program.

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I’ve got this problem too with IBS-C and miserable. I’m on Linzess at the moment but it’s not working very good. I’m at a loss now.

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@judithclark

For those that seek surgery, surgeons don’t want to do a colon resection as it can make thing worse with additional adhesions. I have two meshes so surgeons really don’t want to attempt surgery. I can’t find a surgeon with the expertise to perform the needed surgery. The Mayo Clinic won’t take me as my insurance is not in my program.

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Ahhh!!!
I have been trying to get into see a surgeon. Or I’ll have to go on a liquid diet. Everything I eat gets stuck in that bend, and food traffic gets blocked for days and days.
Thanks for the heads up

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@patriciaannmelt1

I’ve got this problem too with IBS-C and miserable. I’m on Linzess at the moment but it’s not working very good. I’m at a loss now.

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I’ve been on Linzess for a couple of years. It’s not working… but two a day does and my gastroenterologist said it’s fine and prescribed me. However insurance won’t cover it.
It’s probably worth the $1200 per month.
But doesn’t seem safe for extended periods.

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@golladiane

I’ve been on Linzess for a couple of years. It’s not working… but two a day does and my gastroenterologist said it’s fine and prescribed me. However insurance won’t cover it.
It’s probably worth the $1200 per month.
But doesn’t seem safe for extended periods.

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I take the highest dose once a day and it was working great at 1st 4 months ago now nothing. I sometimes feel like I’m close to having a blockage. It’s miserable. And scary too. Like.. what’s next?

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@onaquest

No it is not. Redundant and tortured colon means you have extra colon (redundant) and twisted (tortured). I do have some diverticulosis, but I haven’t had diverticulitis.

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I agree with you.

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@golladiane

Ahhh!!!
I have been trying to get into see a surgeon. Or I’ll have to go on a liquid diet. Everything I eat gets stuck in that bend, and food traffic gets blocked for days and days.
Thanks for the heads up

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I have been experiencing slow motility transit for more than 18 months. I underwent two colonoscopies to rule out any obstruction, but the results showed that the problem is caused by a redundant function. Although I tried using Linzess, it did not work for me. Currently, I am taking Motegrity (1.5mg), which is okay, but what really helps me is a tea called Smooth Moves, which is made from Senna Leaf. I take it every night, and if I miss a night or overeat, I use two tea bags, and after about 12 hours, I get the desired results. You can purchase this tea from any health store. Best wishes!

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I am waiting to get into the Mayo now and have a tortuous/redundant colon and dysergenic defecation as well. I am using the Linzess too but it takes anywhere from 3-6 hours to get away from a toilet and I don’t sleep at night with the pressure I my body. Using the tea are you able to sleep??

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