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.

jaleh | @jaleh | Jan 4, 2023

Does anybody here does Smooth Move tea? It works really well for me but the Dr. is saying I should quit taking it.

REPLY
1 reply
hdeninno | @hdeninno | Dec 17, 2022
In reply to @mel1987 "I was diagnosed in 2010 with tortuous colon which was discovered during a routine colonoscopy. I..." + (show)
@mel1987

I was diagnosed in 2010 with tortuous colon which was discovered during a routine colonoscopy. I have had very few problems until the beginning of 2019 when I began developing severe muscle spasms in my lower left abdomen and lower left back. I cannot think any other reason why these spasms would occur other than a result from the tortuous colon. I have also had severe constipation which I cannot find relief for. Has anyone else had anything similar happen?

Jump to this post

Yes! I have had issues for the past couple of years and told it was Diverticulosis. I had a colonoscopy in June and the doctor told me it was IBSD and I have an extra long colon. It’s miserable. I’m still trying to figure it out. Would love some help too.

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 6, 2022

@colt1234
Welcome to Mayo Clinic Connect!
I’m so sorry to hear about your son’s suffering.
When children deal with chronic constipation it affects their food intake at a time when they need enough nutrition to grow. Your son looks thin in the picture.
If your home is in Canada I think you could bring the test results back home with you and try to get an appointment at a major University Medical Center where they also have all pediatric specialists.
Before deciding on surgery you need more opinions. He also needs close monitoring by pediatric surgeons if/when he has surgery.

REPLY
colt1234 | @colt1234 | Dec 6, 2022

My heart goes out to all of you that have a redundant colon ! Our 5 year old son has that too , his colon is twice as long as it should be we finally found out when we took him to Mexico for more test ! Cuz here in Canada the docs. Kept saying all is normal ! and he’s suffered so much already no matter what diet we try ! Becuz if a colon is too long it has sharp bent areas where not even water can get through sometimes ! And one part of his colon goes way up over his stomach and when it presses on his stomach when there’s stool in there he very often can’t eat for a day or 2 etc. we have found out what helps a little bit for his colon to not get enflamed to often is plexus brand probiotic ,
Why are doctors refusing to take out some colon ?? In Mexico we found such a nice specialist who found the problem and gave us antibiotics for his very bad enfection in colon and another kind of pills to help stimulate his colon to push the stool through, but he said if that did’t help he’d need some colon taken out ,
Anyone out there that has had that surgery done ??
Should we get this surgery done for him in Mexico by that very wise specialist in Mexico ??

REPLY
2 replies
christophermr | @christophermr | Dec 5, 2022
In reply to @tiss "I had the same diagnosis re long, redundant , twisty colon and had awful constipation for..." + (show)
@tiss

I had the same diagnosis re long, redundant , twisty colon and had awful constipation for my entire life. Colonoscopies were a nightmare back in the day when you were lucky to get a Valium. I am 62. 2 1/2 years ago I had a bowel obstruction from a cecal volulous and had to undergo emergency surgery (right hemicolectomy) to remove all of the ascending colon and then some. About 2 feet. It's been a long, hard recovery but with a good doctor, I've done pretty well with the bowel problems. Have been constipated twice since surgery. My colon had a rotated cecum-- rare, congenital bowel malformation that no test can detect unless you obstruct. The surgery itself is an awful recovery but, I'm grateful to be alive since the mortality rate for a cecal volvulus is high. I don't know if the rotated cecum has anything to do with the colon being extra long and twisty.

Jump to this post

Sound very similar to what I just experience this past summer. I am starting to have more constipation again now.

REPLY
Keith Moon | @jcarndt | Dec 5, 2022
In reply to @sallyw133 "I am same but also going to give a try, but maybe at a slower pace...." + (show)
@sallyw133

I am same but also going to give a try, but maybe at a slower pace.
1 cup applesauce, 1 cup oat bran, 1/4 cup prune juice. Spices as desired. Cinnamon, nutmeg, etc. May be stored in frig or freezer (ice cube trays). Begin with two TBSB each evening followed by 6-8 ounces of water or juice. After 7-10 days increase to 3 TBSP. and then at end of second to third week increase to 4. You may have bloating and gas at beginning but should go away after few weeks. Should see improvement in bowel habits in two weeks. With us, though, who knows!!! As always, proceed with caution. I’ll probably start with one.
Thanks for your good thoughts in my journey!

Jump to this post

Dumb question about "oat bran, applesauce and prune juice" recipe...
Do you cook the oat bran before adding applesauce and prune juice ?

REPLY
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Dec 2, 2022
In reply to @grannydee "So you mentioned pancreatic insufficiency… Do you take the prescription enzymes? ie, zenpep or creon? I..." + (show)
@grannydee

So you mentioned pancreatic insufficiency…
Do you take the prescription enzymes? ie, zenpep or creon?
I was misdiagnosed for 30 years with IBS-D and it was a constant struggle because nothing really helped.
My condition ruled my life 😵‍💫.
Finally the 3rd gastro practice said I had a tortuous colon, diverticulitis, chronic gastritis, hiatal hernia, stomach ulcers, cachexia and IBS-D. ALL caused by exocrine pancreatic insufficiency. I now take Zenpep when I eat and it has truly changed my life for the better. My weight is now a healthy 106, (I’m only 5ft 2inches) and very fit age 67.
The ONLY foods I avoid is sucrose. That requires another prescription enzyme and I prefer to just avoid any added sugars. I consume all the fruit I desire with no issues whatsoever. If I want desserts, I just use Stevia to bake with and have no issues. I hope others that suffer from these digestive intestinal issues get tested for EPI. It’s estimated that there are MANY people misdiagnosed. It’s a genetic condition that was fairly unknown until around the year 2000.
There is HOPE! Never ever give up advocating for yourself.

Jump to this post

I’m glad you found something…at least a real Dr. My issue is that I’ve been exactly opposite my whole life….never left home w/out Imodium! I’ve had more than my fair share of “scopes”, they give me the report & send me packing…diverticula w/out diverticulosis, tortuous, long w/ acute bends & blah blah…my 1st scope was not bad. I had mentioned a while back (don’t remember when)…cuz I can’t remember a lot. I mentioned my gums were receding at an alarming rate….since then, I’ve lost a filling & a cap. Now it seems ANYTHING I eat blows my stomach like a balloon!! It’s SOOOO painful, I can barely stand, so I spend too much time lying down
IT SUCKS…I went to my orthopedist (did 1st hip replacement. I just wanted to ask if there was a way to expedite the metal ions from my body.
He said “he’d never heard of it & didn’t know what I was talking about”.. I was floored, I didn’t know what to say.

REPLY
lazycatdayz | @lazycatdayz | Dec 1, 2022
In reply to @clkurth "I am awaiting hearing back from the surgical team as to what’s next in my redundant..." + (show)
@clkurth

I am awaiting hearing back from the surgical team as to what’s next in my redundant colon treatment. In the interim, I take 1 T extra virgin olive oil at night to reliably move my bowels by the early morning, along with a full bottle of water when I arise. It’s a sure flush that works great! I find that my insides are “sore” and tender, so I am gauging what to consume based on this barometer. Staying clear of high fiber foods for now. Sometimes a plain baked potato and a cool vanilla shake is about all I can do. Not the best nutritional intake, but it soothes. Am drinking diverticulitis tea and sometimes slippery elm powder as well. Peppermints also help calm the digestive tract. Staying clear of red meat and doing only chicken, turkey, fish and eggs for now. A half ripe avocado and a bit of sourdough toast is a common diet. Hope this helps someone out there.

Jump to this post

I also have a redundant colon, transverse and sigmoid. Saw a colorectal surgeon who suggested further testing, consider laparoscopic sigmoid resection. Putting that on hold and trying to manage it with lifestyle and strengthening pelvic floor. I agree it is hard to know what to eat because of course we worry about obstruction! I have been able to increase my fiber intake (about 20-25grams) gradually as long as I’m drinking 2 L of water and taking 4 ounces of warm prune juice at night. Since I’ve done that, I am getting much better movements and not having as much abdominal pain since I am clearer. This condition sucks. Wishing you the best of luck.

REPLY
1 reply
clkurth | @clkurth | Nov 30, 2022

I am awaiting hearing back from the surgical team as to what’s next in my redundant colon treatment. In the interim, I take 1 T extra virgin olive oil at night to reliably move my bowels by the early morning, along with a full bottle of water when I arise. It’s a sure flush that works great! I find that my insides are “sore” and tender, so I am gauging what to consume based on this barometer. Staying clear of high fiber foods for now. Sometimes a plain baked potato and a cool vanilla shake is about all I can do. Not the best nutritional intake, but it soothes. Am drinking diverticulitis tea and sometimes slippery elm powder as well. Peppermints also help calm the digestive tract. Staying clear of red meat and doing only chicken, turkey, fish and eggs for now. A half ripe avocado and a bit of sourdough toast is a common diet. Hope this helps someone out there.

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