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 found this group as I googled “ how to increase colon transit in redundant colon”. I have been struggling with constipation since childhood. Few years back , had a CT colonography that showed redundant colon. I used to think I have IBS, redundant colon seemed a better diagnosis. I manage it by eating fiber foods, wheat bread, fruits, vegetables, decreased meat, try to drink enough water but forget, FODMAPs are not good. My problem is that it takes me an hour or more in the morning (sometimes 2-3 shorter bathroom trips) to empty my bowel. I want to be done in 10-15 minutes, I’m a fast pace person ( only thing slow about me is my colon) I do thank God that my problem is manageable ( read other people’s miseries) never needed to go to ER. But I’m a physician myself so maybe I don’t get alarmed as easily as others. My 3 siblings have same problem, so probably hereditary. Just found this medicine called Motegrity that can be used although it’s very expensive and has depression as a side effect , so not going to take it. I figured a while ago that laxatives are not a good solution. The right kind of foods - some fiber , water, a low stress life, physical activity- has made this liveable for me. If I find better solutions, I’ll share. Good luck !

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Thank you for clarifying that. I have had bouts of constipation but usually from something
I've eaten. I take psyllium every night and that has kept me regular. Hope it stays that way.
I have a friend who was constipated for a week and had to have emergency surgery and had
quite a bit of her colon removed. (she had a redundant colon).

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@curiousgirl

Please tell me if I'm wrong but I thought a redundant colon was something you're born with.
I never knew I had one until my first colonoscopy.

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It can be genetic or it can be caused by chronic constipation which stretches the colon, makes is longer, so it creates loops and turns to fix inside the space it has. Easier to become constipated. You may never know you have it, or like those of us sharing here, you find out from a colonoscopy that was difficult or impossible to complete. And even then it may not be causing problems, but one day it just might change your life. And then you have to find out what works for you, to keep things moving regularly. Just my experience.

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Yes, and I'm scheduled for another Endoscopy and Colonoscopy of 08.28.23 if I can find someone to take me. The person who is supposed to take me might not be able as her brother just had a heart attack. I get pre-cancerous polyps and also have AVM's in my colon, and esophagus and don't know if they are anyplace else. I'm sick of feeling sick and I'll be 82, and have had to have these colonoscopies since I turned 44. Colon Cancer runs in the family. They get stuck in two places when doing colonoscopy and the last one I had in 2021 they couldn't get to the ilium don't know that is spelled right. I'm tired of trying to find out what is wrong with me.

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Yes I have . I’m 73 .it’s difficult to deal with.
Different laxative works for several weeks then suddenly stops and I try something else….
I would love to have it shortened surgically but I think it may be risky. The bloating and constipation is very uncomfortable.

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@cipnsue

Thanks for the attachment. I follow a similar diet, but you gave me some new ideas:)

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Yes, been dealing with it for a year, and added with that, I am diagnosed of gastroparesis. My intake of food has changed. Learned to take everything slow.

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@researchmaven

Hi debschmitt, I have all those things too, except the diverticuli I was diagnosed with in my 30s seem to have closed. I live a near-normal life by controlling my food choices and working on my anxiety. Both trigger IBS-C and the severe redundant colon I have doesn't help. I am 68 and active.

Through trial and error I eat zero grain, zero FODMAP, Zero meat, etc. I am almost halfway through with hypnosis therapy to lessen my anxiety as an IBS-trigger. Mineral oil is my laxative of choice. I am trying magnesium as a regular supplement to prevent constipation. See attached for more details. I really believe changing what is going on in your head and what you are putting in your gut is the best solution (for me so far).

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Thanks for the attachment. I follow a similar diet, but you gave me some new ideas:)

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@researchmaven

Hi debschmitt, I have all those things too, except the diverticuli I was diagnosed with in my 30s seem to have closed. I live a near-normal life by controlling my food choices and working on my anxiety. Both trigger IBS-C and the severe redundant colon I have doesn't help. I am 68 and active.

Through trial and error I eat zero grain, zero FODMAP, Zero meat, etc. I am almost halfway through with hypnosis therapy to lessen my anxiety as an IBS-trigger. Mineral oil is my laxative of choice. I am trying magnesium as a regular supplement to prevent constipation. See attached for more details. I really believe changing what is going on in your head and what you are putting in your gut is the best solution (for me so far).

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Thanks so much for the helpful suggestions. Good to know I’m not alone.

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Thanks for your response. I did have a stool test. It showed hormone deficiency. Well something in the colon IS painful. That’s the problem with an invisible disorder. People think it’s in your head.

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@debschmitt

I’ve been suffering for two years with chronic constipation abdominal pain, loss of appetite, extreme weight, loss, fatigue, bloating, all which caused clinical depression. I was told that it was probably IBS – C. I’ve tried to manage with food , meditation and eliminating anxiety in my life. Laxatives don’t really work but cause nausea. Of course I have to do a clean out about once every 10 days usually with an enema, which hurts during and after. Finally, after going to 4 Gastroenterologist, several trips to the ER and urgent care center and finally changing my internal doctor, a diagnostic colonoscopy was performed. It revealed diverticulitis, diverticulosis, and a redundant tortuous colon. I am undergoing currently a colon transit test using.Sitz beads. I’m anxiously waiting the results as I’ve been told that Gastro surgery is highly likely. Has anybody else had surgery for this disorder please? I’m 70 years young and try to stay as active as this condition allowed with swimming, walking and paddle boarding. I’m so ready for a change. Thank you.

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Have a stool test! I had similar symptoms for years! Turned out to be Exocrine Pancreatic Insufficiency ( pancreas not producing enough digestive enzymes).

I also have torturous colon. Only 2 of last 3 GI could complete colonoscopy. I keep being told it’s not possible for it to cause abdominal pain 😕

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