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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C Elizabeth Clark | @ceclark41 | Mar 26, 2021

Thanks for the nifty image of your colon! I have had esophagrams which seem to show a tortuous esophagus. Many in my family as well as myself, have tortuous blood vessels. My femoral arteries, the usual route for cardiac catherization tools to get to the heart, are described as tortuous. Being old at 79, I have more fecal incontinence as well as urinary frequency. Pelvic Floor Therapy with wise counselling by a specialty therapist was very helpful. I now use three Kirkland fiber capsules at night, at least one Medjool date (what a treat) a day, and hope to increase my fresh vegetables and fruits as we welcome Pacific Northwest Springtime garden foods. The National Institutes of Health has a rare condition website with more information about Tortuosity syndromes. Each condition webpage has a reference to an information specialist who can provide more recent information: https://rarediseases.info.nih.gov/diseases/774/arterial-tortuosity-syndrome

Amanda Burnett | @amandaa | Mar 26, 2021

In reply to @nixbroome "What a great response. I'm going to try all your suggestions!" + (show)

Hi @nixbroome, and welcome to Mayo Clinic Connect. You came to a great place to get answers. I am sorry you have been dealing with this for so long. How have you handled treatment in the past before you were diagnosed? Are you referring to the FODMAP diet? Here is a great video on Connect about that specific diet and how to navigate it.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/a-map-for-the-fodmap-diet/

nixbroome | @nixbroome | Mar 26, 2021

In reply to @sher71 "Hi Judy, I too have just recently been diagnosed with Redundant, Fixed, Ridged colon. I requested..." + (show)

@sher71

Hi Judy, I too have just recently been diagnosed with Redundant, Fixed, Ridged colon. I requested a consult with a nutritionist and that has given me even more questions! I've been searching the web for different solutions to constipation and found a lot of different approaches. I don't have diverticulitis so your probably much different from me. I have horrible constipation and never get "the runs". I recently got a book called "what the heck should I eat" and am reading it now. It's not directly addressing my issues but it is VERY informative. I recommend it. I too had lost a lot of weight, was down to 98 lbs. (5'2") :o( But of course, my gut was bloated and "angry" so I looked about 3 months pregnant. YUK. The bloating, not being able to get rid of gas, and not pooping were driving me crazy. I just want to feel normal. It certainly makes it hard to do anything in a social setting and 'romance' has been out of the question. I'd love my life back! I feel best when I don't eat. You too? Ok, so things I'm doing to try to help myself. First, water. LOTS of water. I fill a jug with the ounces marked on it every morning and that makes it easy to track how much I've had for the day. My goal is 60 oz. (more than 1/2 my weight in oz.) I started a food journal, keeping track of everything I eat and drink. I make side notes if I feel gassy or bloaty after I eat that food. I write if I had a BM that day or not and the consistency. I am trying 2 stool softeners and 1 500mg Magnesium every night and eating a low fiber diet. I need to get back to walking everyday, which I've skipped because I felt so bad. But even if you feel bad the walk makes you feel better. It's winter here and icy and cold! So I just purchased a treadmill. Hoping that makes a difference as well. Don't ever feel like your Dr.'s office is getting tired of you. You are your own advocate! You need to keep asking and get referrals if they can't help. I'm finding that most Dr.'s don't deal with this well. Let me know if you want to chat or have questions. We're all in this together. Hope this was helpful. Sometimes its just nice to know your not alone. :o) Sherrie (Pete is my nick name)

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What a great response. I'm going to try all your suggestions!

nixbroome | @nixbroome | Mar 26, 2021

Hi
I was diagnosed today. Also he bottom bit is redundant. I've had problems my entire life, especially with urinary frequency as it's sitting on my bladder. Also gas and constipation. I blamed diabetes type 1 and codeine dependence (which don't help). Now I guess will try that diet.

ruth1617 | @ruth1617 | Mar 24, 2021

In reply to @bonn "Please know that I do understand. Your story could be mine! I am 72 yrs old..." + (show)

does triphala work? which brand? the Sprouts' store's brand is crap (pun intended)

ruth1617 | @ruth1617 | Mar 24, 2021

thank you all for generously sharing. I've struggled with constipation all my life. I just found out about my redundant colon. I am very active. 1 1/2 hour yoga sessions four times a week, I had appendecitis last fall and then colonoscopy But the constipation has gotten worse. I thought it was because I started taking Adderall. But my psychiatrist said that the 5-10mg is not going make such a difference. today, in my yoga class we focused on twists. It helped. I am waiting for authorization for Linzess. ( I used to take 2000 mg of Mg, but since Feb, nothing works. And, as others have said, then the vicious cycle of not eating enough starts....)

like everyone here, I 've tried fiber,laxatives, etc. I tried a ayurvedic/vatta pacifying diet. even though I'm not much of a meat eater, meat soup is good for me.

based on what read here, i'm putting an app in my phone to remind to drink.

ashweb901 | @ashweb901 | Mar 8, 2021

In reply to @sickofbeinsick1 "I also have long torturous colon. GI surgeon noted “the colonoscopy was technically difficult & complex..." + (show)

Well that's not very nice. I don't think a long colon is a systemic disease. Do you have diabetes or heart disease or Crohn's or UC?

sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Mar 8, 2021

I also have long torturous colon. GI surgeon noted “the colonoscopy was technically difficult & complex due to restricted mobility, a redundant colon, significant looping & a torturous colon”.
That was in ‘18.
They referred to patient (me) with severe systemic disease...doesn’t sound promising .

ashweb901 | @ashweb901 | Mar 7, 2021

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

No, tortuous colon is extra loops and lengths of colon. Diverticulitis is pockets along the colon that fill with seeds or popcorn kernels and get inflamed. And I saw a small study that showed that TC and diverticulitis rarely occur in the same person, but on this board I have seen several people say they have both.