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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vholtzapple | @vholtzapple | Aug 25, 2023

In reply to @cipnsue "Thanks for the attachment. I follow a similar diet, but you gave me some new ideas:)" + (show)

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.

sheilagreen | @sheilagreen | Aug 25, 2023

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.

dablues | @dablues | Aug 26, 2023

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.

dianesgk | @dianesgk | Aug 28, 2023

In reply to @curiousgirl "Please tell me if I'm wrong but I thought a redundant colon was something you're born..." + (show)

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.

curiousgirl | @curiousgirl | Aug 28, 2023

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).

eisham | @eisham | Sep 5, 2023

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 !

bosslady72 | @bosslady72 | Sep 17, 2023

I’ve found out this year about having a redundant colon. This is very traumatic for me. I’m usually sick the majority of the time dealing with constipation. The pain of bowel movement of any kind is truly torturous in every aspect of the condition. I’m needing a doctor that has the patience to listen and understand that I need help daily. Not just from meal to meal, but the entire digestive process, of which is painful to endure constantly.

bosslady72 | @bosslady72 | Sep 17, 2023

In reply to @denisep "Hello. I also have a redundant colon. I am 51 yrs and have been constipated all..." + (show)

Thank you for sharing. I appreciate the transparency and feel a bit better knowing that I’m not alone in this. I’m more so scared about the fact that I could actually get blocked. I will start to be more active in pressing my doctors.

burghgrl | @burghgrl | Sep 18, 2023

Hi Jayne- I have it too- apparently many more than I ever knew of & were all looking to take care of ourselves without surgery! I don’t know how that doctor can say you’d regret not having it!

I manage extremely well on the regimen I follow- I’ve just posted it on this site, this group- but please don’t lose hope. You can Do This!! Self management is the key! ❤️❤️

researchmaven | @researchmaven | Sep 18, 2023

In reply to @dablues "Yes, and I'm scheduled for another Endoscopy and Colonoscopy of 08.28.23 if I can find someone..." + (show)

A normal colonoscopy takes about 20 minutes. I have a severely redundant colon and my gastro doctor took 60 minutes to do it. I also didn't clear out completely, even with an extra day of prep. Somehow it was dealth with.

Some folks in this discussion group have a longer prep procedure -- I will try that next time when I am due. With a history of colon cancer in your family, your doctor should be taking the extra time to navigate your colon.