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.

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.

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.

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.

cipnsue | @cipnsue | Aug 24, 2023

In reply to @researchmaven "Hi debschmitt, I have all those things too, except the diverticuli I was diagnosed with in..." + (show)

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

deb crutcher | @debschmitt | Aug 23, 2023

In reply to @researchmaven "Hi debschmitt, I have all those things too, except the diverticuli I was diagnosed with in..." + (show)

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

deb crutcher | @debschmitt | Aug 23, 2023

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.

cherawgirl | @cherawgirl | Aug 23, 2023

In reply to @debschmitt "I’ve been suffering for two years with chronic constipation abdominal pain, loss of appetite, extreme weight,..." + (show)

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 😕

researchmaven | @researchmaven | Aug 23, 2023

In reply to @debschmitt "I’ve been suffering for two years with chronic constipation abdominal pain, loss of appetite, extreme weight,..." + (show)

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).

Shared files

My IBS routine 08222023 (My-IBS-routine-08222023.pdf)

janejosephine | @janejosephine | Aug 23, 2023

In reply to @carcar "Is this the same condition as Diverticulitis?" + (show)

Its my understanding diverticulitis is little pockets in the colon that trap food like nuts and popcorn. Its a bummer not to eat them, but a friend had it and had to have part of her colon removed.