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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@adrienne625

I have chronic idiopathic constipation and a redundant colon. Two years ago, my gastroenterologist recommended a new capsule called Vibrant. When a capsule is electronically charged and swallowed in creates parastatals in the colon, thereby pushing the stool along the colon. Most of the time it works very well for me and prevents constipation. Is anyone else using this? There are drawbacks which I won’t go into in my initial post.
Adrienne

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Can you tell us more about this capsule?? I have never heard of this?

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@jlynnwalls

I was told I have this also. I have severe constipation then episodes of severe cramping, diarrhea, and vomiting. It’s some of the worst pain ever. It feels like I can actually feel the feces move thru the colon until I have a bowel movement. The episodes generally last about 4 hours then I sleep the entire day. I had an “episode” on an airplane once and you talk about humiliating. The flight attendant busted the door open because he wanted me to come out of the bathroom and I kept telling him I couldn’t and he kept saying I had to and I’m sitting in the toilet with diarrhea and vomiting in the sink at the same time. The pilot then told my husband they were going to make an emergency landing and my husband refused and tried to explain my situation. So then the pilot said they would get an ambulance ready at our destination and again my husband refused and explained it’s a chronic condition and it will pass. I was embarrassed and my husband could have just died, once we landed, my husband looked out the window and there sat an ambulance. I don’t know if it was coincidence or what but thank goodness they let me off that plane. I’m terrified to fly now because of this incident.

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Do you have trouble sleeping every night? I can't hardly sleep and I don't during the day either... I am always so focused on getting miles in walking and then the misery starts all over. Unfortunately , I have dysergenic defecation on top of the redundancy and tortured colon.

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I have tortuous or redundant colon and serious diverticulosis and internal hemorrhoids for many years identified during colonoscopy. Gastro doctor uses pediatric scope after thorough prep. I have a difficult time passing waste and am constipated most of the time. I take Linzess 290 daily, eat prunes, take stool oftener and take Dulcolax and frequent enemas to be able to defecate. I am an 82 year old male, who is active and lives alone. I also have serious sleep apnea, chronic bronchitis, asthma and COPD from an on-the-job long-term chemical exposure. No history of smoking, alcohol or drug usage

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@adrienne625

I have chronic idiopathic constipation and a redundant colon. Two years ago, my gastroenterologist recommended a new capsule called Vibrant. When a capsule is electronically charged and swallowed in creates parastatals in the colon, thereby pushing the stool along the colon. Most of the time it works very well for me and prevents constipation. Is anyone else using this? There are drawbacks which I won’t go into in my initial post.
Adrienne

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I have considered the Vibrant pill, but given the tortuosity issue, I'm scared that it will get stuck in a bend/loop. Is this an unfounded concern in your experience or your GI's expertise? Thank you!

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@lapxp

I have considered the Vibrant pill, but given the tortuosity issue, I'm scared that it will get stuck in a bend/loop. Is this an unfounded concern in your experience or your GI's expertise? Thank you!

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I had the same concerns about capsules getting stuck. It has happened a few times which I found out by an X-ray before having an mri for unrelated issues. Once, my dr had me take a bowel prep which resolved the problem but no one wants to go through that f it isn’t absolutely necessary. Most recently I took Phillip’s milk of magnesia when a X-ray showed 4 trapped capsules. Two or 3 nights on that resolved my problem. I have been on vibrant ever since it was approved by the FDA. With a few glitches, it has worked very well. I never thought I would have thought I would have normal bowel movements.
Adrienne

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@sickofbeinsick1

I’m in Houston…all I can say is good luck. I’ve been dealing with GI’s for Well over 10 yrs. The pain is unbearable. I can’t travel, wear anything around my waist…I do have a vibrating heating pad, it’s soothing while using, but that’s about it. I take Lactulose “daily”, but I don’t like taking anything that much, so I live (if you can call it that) on liquids mostly. I have given up.
Goood luck!

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The only way to stop bowel muscles from atrophying and stop working is to exercise them with fiber. A high percentage of soluable fiber foods (not insoluable ) at every single meal I found is key, and those that contain cooled resistant starch (not digested by small intestine and makes it to the colon) best. Examples of high soluable fiber foods are oatmeal, hard crunchy fresh apple flesh, root vegetables etc. Overcooking will destroy the fiber. Insoluable is husks, skins, roughage which can irritate an already irritated colon. Both types are needed in the diet but meals that have high percentage of soluable fiber I have found as a key. Chew food to soft pulp with no hard dry pieces. Some oil/fat at each meal also keeps things moving. I wrote more extensively on `Tortuous colon diagnosis and diarrhea`. Mayo posts. Same problem whether diarrhea or constipation it seems. Drinking and moving all day. Sitting a lot seems to stop things from working.

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@sueshel

I had surgery in June 2022 for a mobile cecum. The right colon had moved to the left quadrant of my abdomen and created an obstruction. Surgeon just moved the right colon back in place. I just had a CT scan (July 2024) with contrast that showed the ileocecal valve is in the left quadrant, not the right. The radiologist didn’t even mention it as an incidental finding. But I constantly have bloating, constipation, etc. Anyone else have this happen? I had never heard of the ileocecal valve. Does Mayo perform cecoplexy? My surgeon told me in 2022 they don’t work and was thinking of removing the right colon before he moved it back in place. . Looking for viable options if there are any - hoping cecoplexy is a possibility.

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I found your old post and I hope things are a lot better now. I've posted a number of times today to ask people how they were treated when they had mobile cecum and what their experience was if they had surgery. Did you ever find a surgeon or did you decide against surgery? Thank you for anything you could share.

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I also have redundant loopy colon and chronic constipation. I am seeing a colon and rectal surgeon next week to see what I can do since I don't like linzess or trulance. I want to see what else could be wrong with my lower digestive system. I no longer have any bowel movements unless I use enemas or suppositories. I wonder about water irrigation as another possibility. would love to hear suggestions, Lupejoan

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I tried every med for a very redundant colon. Motegrity has worked for me, along with Miralax. You can safely use several doses of Miralax throughout the day if needed, especially when traveling. Miralax alone did nothing for me. Good luck!

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@marjoriem

I was just diagnosed with a redundant or torturous colon. I also have a hiatal hernia, esophagus motility issues, and acid reflux. What I have discovered is that there is no medications, supplements, or diet that will totally correct these issues. I quit taking PPI inhibitors because of the recently released study that they can cause a 30% chance of early onset dementia and I have a family history of that. So, I have been left with trying to figure all this out on my own. My Gastroenterologist prescribed heavy doses of Miralax to clean me out and said to take 1 capful, three times a day for maintenance. Well, that was awful! I was having accidents (if you know what I mean) so I had to stop it. Then I read on this blog that someone said a supplement called Cleanse More helped them (magnesium supplement) so I asked my doctor about it and he said it was safe to take and told me to take 2 capsules every other day. That was touch and go. Two capsules seemed to be too much and one wasn't enough so right now I just started back on 1 capful of Miralax once a day and two Cleanse More capsules every other day. We'll see what happens. Regarding the high-fiber diet, I have read conflicting reports and my doctor told me that a low-fiber diet is better for this condition. High-fiber foods will cause too much bulk and will be harder to pass through. I have also seen a surgeon regarding the colon issue and he said surgery is a last resort but to come back to see him if I cannot get a handle on this. It is so confusing trying to figure all this out!

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Esophocool supplement

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