1. < Digestive Health

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.

curlyq | @curlyq | Feb 2, 2022
In reply to @lesliedenny "I was just diagnosed after a painful colonoscopy. Unfortunately, the doctor didn’t stop to talk aboutit..." + (show)
@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.

Jump to this post

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?

REPLY
tamicherrie | @tamicherrie | Feb 2, 2022
In reply to @seasalted "Hello all .... I just joined Mayo Clinic Connect. It is my latest grasp at getting..." + (show)
@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.

Jump to this post

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

REPLY
alyssamcatee | @alyssamcatee | Jan 30, 2022

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 ?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 30, 2022
In reply to @alyssamcatee "I was just diagnosed with tortuous colon malposition. I had intestinal malrotation surgery 13 yrs ago..." + (show)
@alyssamcatee

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

Jump to this post

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?

REPLY
alyssamcatee | @alyssamcatee | Jan 29, 2022

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

REPLY
1 reply
danwg | @danwg | Jan 22, 2022
In reply to @janicerenee "I only learned about my "torturous colon" by reading the report from my colonoscopy, in which..." + (show)
@janicerenee

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

Jump to this post

I had the exact same experience last year, report said difficult colonoscopy, significantly torturous colon, I have issues, this was a diagnostic colonoscopy, no follow up, doctor was out the door before I woke up.

REPLY
pbt | @pbt | Jan 22, 2022
In reply to @janicerenee "I only learned about my "torturous colon" by reading the report from my colonoscopy, in which..." + (show)
@janicerenee

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

Jump to this post

Exact same experience -- no followup, no guidance. This site has provided the only info for me to date.

REPLY
euqcaj | @euqcaj | Jan 22, 2022
In reply to @janicerenee "I only learned about my "torturous colon" by reading the report from my colonoscopy, in which..." + (show)
@janicerenee

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

Jump to this post

I am 70 years old and active and otherwise healthy, except for the tortuous intestine I've dealt with all my life. I wanted to share with you my decision to not have any more colonoscopies. The last one this past year was devastating on my body because of the difficulty for the Dr. to do the procedure with my colon. It left me "tortured" and I told her I was never going through this procedure again. ( She mentioned there are other ways to check for polyps etc. for preventative measures.) Possibly I will look into that down the road. But, as I said, with the tortuous intestine, you run the risks of the intestinal wall being punctured and then having more problems than you bargained for. My insides were so irritated it took weeks for the bulging to recede. I am not exaggerating. I will never (I really don't want to!) ever have a colonoscopy again with my long tortuous intestine. I just don't think it's the best thing in my case. And I believe there are many others out there like me. Please find a doctor that will listen and treat you as an individual and not just "follow the script". All the recommendations that were originally suggested for me, such as Miralax, more fiber (which isn't a bad idea), more water, probiotics, and on and on, didn't fit what I needed for me. Miralax didn't work. I followed everything I was told to do because I really wanted to improve this condition. It can make you feel so sick at times. It was on this site that other people had mentioned Prunelax to help with irregularity. It has worked great for me most of the time. I do use Bisacodyl every week or two to help the system really clean out. And this advice was through others on this site, not a doctor. It has been the best advice! Best wishes to you! Jacque

REPLY
1 reply
thellman | @thellman | Jan 22, 2022
In reply to @janicerenee "I only learned about my "torturous colon" by reading the report from my colonoscopy, in which..." + (show)
@janicerenee

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

Jump to this post

Fire him and find a new GI Dr.

REPLY
janicerenee | @janicerenee | Jan 21, 2022

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

REPLY
4 replies
View MoreView Less
Please sign in or register to post a reply.