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.

@kdroud

Hello everyone! I found out last year that I have a redundant colon. I've had issue with constipation for several years so it was good to finally find out why. My question is what has worked for others to help elevate the constipation? Probiotics? Atrantil? Any feedback would be greatly appreciated!

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Hi @kdroud and welcome to Mayo Clinic Connect. I am glad you finally found the answer as to why this was happening. You will see that I moved your new post to an ongoing discussion about redundant colon. I did this so you could connect with other members going through similar diagnoses.

Did your doctor prescribe anything for you to counteract the constipation?

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I was prescribed Linzass, but can't afford it. Trying to find something more natural then prescription. Just started trying Coconut oil, probiotics and bone broth.

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@kdroud

Hello everyone! I found out last year that I have a redundant colon. I've had issue with constipation for several years so it was good to finally find out why. My question is what has worked for others to help elevate the constipation? Probiotics? Atrantil? Any feedback would be greatly appreciated!

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Daily exercise, including 60-70 minute brisk walk, lots of fiber including whole grains, nuts, fruits and veggies. Behavior vs. pills is better.

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@kdroud

I was prescribed Linzass, but can't afford it. Trying to find something more natural then prescription. Just started trying Coconut oil, probiotics and bone broth.

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Have a look at “Prescription Assistance, a company that is legit assistance for expensive prescriptions.
$50 bucks to apply and send in proof of income etc.
I couldn’t afford my prescription for Zenpep at $1200 per month!
I get it through this company and they have been great to work with.
I DO pay around $60 a month to this company.
The costs are based on your yearly income. I’m retired and no matter HOW well you plan for retirement NO ONE expects to pay $1200 a month for one prescription!
You have to reapply on a yearly basis, and that’s no big deal.
And yes I did go through the various “appeals” process to no avail both with Medicare and Medicare supplemental insurance.
It was a complete waste of time.
Check out Prescription Assistance, they even called to check on me after my first full month!!!
They have treated me with dignity and kindness.
I hope you give them a try!

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@kdroud

Hello everyone! I found out last year that I have a redundant colon. I've had issue with constipation for several years so it was good to finally find out why. My question is what has worked for others to help elevate the constipation? Probiotics? Atrantil? Any feedback would be greatly appreciated!

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Have you tried OTC called Prunelax? It’s worked for many members here when other products have not. Definitely worth a try.

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@clutch

Have you tried OTC called Prunelax? It’s worked for many members here when other products have not. Definitely worth a try.

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Thank you, I will try that.

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@kdroud

Thank you, I will try that.

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I see where Prunelax is a stimulant laxative. Besides dried plums it has Senna, so I'm trying so hard to not use a stimulant laxative.

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@euqcaj

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

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I have tortuous / redundant colon also. 70 yrs old and constipation all my life never knowing why. It was diagnosed via a Barium enema due to failed colonoscopy. My new GI Dr. is going to do a balloon colonoscopy next month, with a stronger, longer lasting anesthesia . As I have aged it has gotten worse. Stress and the pandemic haven't helped. I'm drinking Lots of water 64+ oz. and eat a good amount of fiber , Miralx worked last month after taking it for 7 days, then I was going way too many times a gay. One day I'm good the next day " rabbit poo" It's very frustrating! I don't want to take stimulant laxatives, I see where Prunelax has Senna too which is a stimulant. I take probiotics, eat fruit with skins etc. Getting a Dr. to understand and not just give the "standard" answer is hard to find. I will see how the balloon colonoscopy goes. I know living like this is not fun! I'm sure all on this site can agree.

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@sweetdixie2

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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So sorry to hear this. I have 2 friends that had the surgery and they did very well. Hope you are also taking probiotics to get your microbiome healthy.

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@tropicbev

Welcome, seasalted!
You described my daily life so well that I printed your post and took it to my GI doctor appointment! I brought up the subject of resection surgery to remove some of the extra loops and twists, and she said that surgeons will not do that unless it is an emergency situation and there is a total obstruction or strangulation of colon (volvulus). I had emergency surgery for that condition when I was 30 years old, but they did not remove any of my colon. Just "flipped it back". So I've been struggling with this for 38 years now. I keep a food diary and am trying to get myself into a "regular" routine but I am either constipated or have diarrhea from laxatives. Some days are worse than others. I had no idea there were so many others like me until I joined Mayo Clinic Connect, which I found by accident just a few months ago. It is very helpful to me when I start feeling sorry for myself. Good luck, and I look forward to your future posts.

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I feel your " pain" and the stress . It's difficult to manage because it's like a moving target. Different everyday.

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