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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Profile picture for pbt @pbt

Thank you, Jacque, for sharing your experience. I'm still awaiting direction from my GI doctor, so have relied on this site and internet info so far. I've just started to follow a similar regimen, i.e., exercise, fiber, lots of water. I tried Prunelax last week for the first time and found it much better than Miralax. Now I'm looking for a good source of psyllium to add to my diet -- maybe in smoothies? Thanks for your encouraging words and all the best to you! Pam

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Hi Pam! I mix 8gm of powdered psyllium into my oatmeal or cereal. It changes the consistency for sure. Sometimes I'm repulsed by it but have done this for years. Switching to cereal helps and adding stevia sweetner. So your smoothie idea might be a good one! Jacque

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Profile picture for leighlindsey1 @leighlindsey1

I am a 66 year old women a reluctant colon. I just found out after colonoscopy. I noticed bloating in the last year and embarrassing gas. On numerous occasions I have had the urge to pass a BM immediately. I literally had to take a shit right then. I was in the woods so I had some privacy. It was not diarrhea. This has happened usually on long walks.
There is always a pain on my right side by the duodenum. I've had ultrasound that found no issues.
So, here I am asking after 20 or so colonoscopy why now know? I never was told this problem with elongated Colon. I had a difficult colonoscopy so the doctor told me. That doctor did one three years ago. I am asking the group to help me understand from a person point of few. I'm perplexed since I never heard of this condition nor has anyone I asked.

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I love this - "sometimes I am repulsed by it but have done this for years." We really do whatever works! thx!

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I was just diagnosed with tortuous colon malposition. I had intestinal malrotation surgery 13 yrs ago . Does anyone else on here have this ?

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Profile picture for alyssamcatee @alyssamcatee

I was just diagnosed with tortuous colon malposition. I had intestinal malrotation surgery 13 yrs ago . Does anyone else on here have this ?

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Hi Alyssa, welcome. I moved your question to this existing discussion group about tortuous colon called "Anyone else have a Redundant / Tortuous Colon?" https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

I did this so you can connect with the many members talking about tortuous colon like @danwg @pbt @euqcaj @thellman @chenry44 @tropicbev @seasalted @lasirvent @dianecostella and many others.

You may also be interested in these related discussions:
- Recommended fiber amount for diverticulosis and tortuous colon https://connect.mayoclinic.org/discussion/recommended-fiber-amount-for-diverticulosis-and-tortuous-colon/
- Trying to find answers after cecopexy - tortuous colon - mobile cecum https://connect.mayoclinic.org/discussion/trying-to-find-answers-after-cecopexy-tortuous-colon-mobile-cecum/

Alyssa you mention that you already had intestinal malrotation surgery 13 year ago? What symptoms or issues are you experience that led to the diagnosis of tortuous colon?

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I had a colonoscopy this past week . I have severe constipation ,nausea stomach aches . They had a hard time getting through doing the colonies. Will it keep getting worse and if so is there surgery to fix it ?

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Profile picture for seasalted @seasalted

Hello all .... I just joined Mayo Clinic Connect. It is my latest grasp at getting information and help with my tortuous colon condition, which has plagued me for 40 of my 54 years. I was diagnosed with tortuous colon in 2012, and had a bunch of tests performed on me which ruled out celiac, Crohn's, gluten allergy, and other stuff. I have some food sensitivities, but essentially all my GI problems are due to my tortuous colon. Basically I am constipated 24/7/365 because my colon is a long and winding road from which nothing emerges at the end without some sort of intervention. In the very best of scenarios, usually with the help of coffee after strenuous exercise, I go once a week, two at most. I start out each day feeling OK, but as the day goes on and as I ingest food, I feel worse and worse with the bloating, gas, and general feeling that I am carrying around a cantaloupe in my abdomen. I am a relatively small person, but my stomach area feels disproportionately big because of my tortuous colon and the stuff in it that I carry around from not being able to ditch it like a normal person. My gut feels best when I don't eat (except for that hunger thing). I relate to @sher71 and probably a lot of others in this. I drink lots of water, exercise every day, and eat as much fiber as I can. So my condition would be even worse if I didn't do these things.

From reading the many posts in this thread, I see that a tortuous colon is not as rare as I thought it is. I feel better at the thought of being able to talk to people about this, people who know what it is like to have to live with this. People who have been told (e.g. @scottisfull), as I have been told, that a tortuous colon is not a big deal and can be totally managed by more fiber, water and exercise. People who know this is not true.

In the last couple of days of reading this thread, I have gotten some ideas that I will try, and just for that I am already very happy and grateful. I learned that there are many like me who have to take 3 or 4 doses of Miralax per day in order for it to do anything. Or, take other stuff, natural and otherwise, to coax the colon to wake up and do something. I relate to those like @lasirvent and @dianecostella who have one thing (or nothing) that works for them.

I started thinking the only solution for me is to take out the extra loops and twists and lengths of my colon in order to get better. Looks like some folks like @thellman and @emma83916 are also thinking about this, and some, like @ellemorgan and @kathyoung, have had it done. I would love to discuss further.

Happy New Year to everyone and I wish all a 2022 with a better stomach.

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My colonoscopy was Monday. I was told I have a redundant (tortuous) colon. I’m learning a lot by reading these posts. Thank you.

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Profile picture for lesliedenny @lesliedenny

I was just diagnosed after a painful colonoscopy. Unfortunately, the doctor didn’t stop to talk aboutit so I am doing my own research. For the last several years, since my last coloscopy, I have had episodes where I cannot relieve myself then it feels like I am going to pass out, followed by a drop in blood pressure with cold sweats. These episodes take up to 30 minutes to finish and I have to lie down afterward. I am wondering if they are related. I certainly appreciate everyone’s experience and input.

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I was diagnosed 2 weeks ago after my colon prep failed prior to a horrible colonoscopy. I am very fit, but lately have looked almost pregnant with bloating and gas. I had a colonoscopy five years ago due to colon cancer history and it was normal. I have always struggled with constipation though. I had an intussusception as a baby where my bowel blocked and wonder if this was the start. This did seem to come out of nowhere. Any insights?

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Profile picture for alyssamcatee @alyssamcatee

I had a colonoscopy this past week . I have severe constipation ,nausea stomach aches . They had a hard time getting through doing the colonies. Will it keep getting worse and if so is there surgery to fix it ?

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I had one a couple yrs ago and have a tortuous colon. Then doctor told me it was so twisted I could never have surgery then left. I joined this group to learn more. My tummy is so swollen, i wish I knew how to stop that if possible. Im 62 and look pregnant. Cant exercise much due to let of osteoarthritis and recent hip replacement.

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hi. i connected with this site to find a GI surgeon who will give me info as i have diverticular disease and flare ups of diverticulitis every few weeks and antibiotics which dont really take away the pain anymore. i had a pik line inserted and was on antibiotics for 11 weeks. fine for a bit and pain has come back. consults with surgeons and they say i need surgery but i could get sepsis and die. i need to have surgery and scared and no surgeon will touch me i am so upset, depressed, no quality of life and tired of excruciating pain. the sigmoid colon is rotting i am sure. PLUS i have a mobile cecum bowel what do i do?????

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i am also getting colonitis on the right side now. this all has been going on for a few years but march till present has been hell for diverticulitis. PLEASE I NEED ADVICE. i hardly eat and dont eat seeds, popcorn etc that could irritate. starting to lose weight as i have no appetite from pain killers. need help and advice on what to do. SURGERY OR NOT FOR A RISKY PATIENT

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