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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Profile picture for bborth @bborth

About a year ago I had a colonoscopy that revealed this diagnosis. I have had GI issues for years, and this was the first time I had heard of this. For this procedure, I took a double dose of the cleanse drink given my slow transit issues. The doc said I still needed an enema of some sort to clean me out given stool was still in the colon. How is that possible when you basically are all liquid coming up the back end, and could not understand how anything could be left in you. Well, 10 months later I am back to where I was feeling miserable, and jammed up. I did a colon cleanse 5 days ago (regular strength) and nothing changed. Is there a more high powered enema that I need to have? Trying to convince my doc to do that, but they insist on trying medication first which to this point has not helped. So frustrated.

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I don't have any special solutions for cleaning out if the meds are not working (but mild food poisoning helps -- I wish I was kidding, but I am not).

I just want to say that for my severely redundant colon, I got relief from a dietary change: hot cereal (not thick) for breakfast, smoothies for lunch (not thick) and a vegetarian dinner (no meat or fish that backs me up). Small quantities of dense food (like heavy wholemeal bread). A focus on root veggies instead of baked goods. I also drink liquids (usually hot) throughout the day. (For me, even having a liquid drink with dense food like bread isn't good enough.)

I also make sure I add a bit of slippery elm powder (inner bark) to that breakfast and lunch, and also work it into dinner, usually as a tea. Dessert is more hot cereal. Also a magnesium supplement - my gut is toast, so I use a gentle one - Hilma's Gentle Bowel Movement Support.

For adding an urge to "go," which I think helps a redundant colon, I use fresh kiwi and stewed rhubard. Perhaps the leafy greens (frozen spinach to my smoothie and fresh greens like collards or kale with my dinner) help too.

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Profile picture for shortiseltzer @shortiseltzer

I’ve been dealing with weight loss, diarrhea, bloating, gas feeling full and acid buildup. I had my first colonoscopy/ upper endoscopy and it revealed that I have a torturous colon.I’m currently taking anti diarrheal, acid reducer and nausea meds as needed.
I’m very interested to hear about what foods are easier with this issue/ issues. I have not had much luck with most foods except bland.

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I got my results and I have both gastritis and collagenous colitis. I have been prescribed Budesonide and my doctor expects great improvement before I follow up Tuesday. I have already limited my diet immensely, to mainly chicken and rice, softer foods. But I have always been a picky eater but this is taking it to a whole new level.

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Profile picture for barjar @barjar

I was also just diagnosed with torturous colon following
a colonoscopy. Prior to this diagnosis I had diarrhea.
I was prescribed Cholestyramine. It is very helpful.
I take it daily and no more diarrhea.

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Were you told you have bile acid malabsorption (BAM)? I ask because that is the main reason to take this medication.

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Profile picture for shortiseltzer @shortiseltzer

I’ve been dealing with weight loss, diarrhea, bloating, gas feeling full and acid buildup. I had my first colonoscopy/ upper endoscopy and it revealed that I have a torturous colon.I’m currently taking anti diarrheal, acid reducer and nausea meds as needed.
I’m very interested to hear about what foods are easier with this issue/ issues. I have not had much luck with most foods except bland.

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Yes I was diagnosed with BAM. My prescription has been changed. I am now taking Colesevelam for
bile acid malabsorption.

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I have a tortuous colon. I don't think it's that uncommon. I recently had a sigmoid colonoscopy and afterwards the g.i. told a few of his patients have same problem. After emailing multiple times about how I was evacuating fecus he said if I was interested he would give me a name of a surgeon who performs sigmoid colon resection. After reading some articles I was afraid and canceled the appt w surgeon. I am elderly woman.

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Profile picture for dfloyd1133 @dfloyd1133

I have a tortuous colon. I don't think it's that uncommon. I recently had a sigmoid colonoscopy and afterwards the g.i. told a few of his patients have same problem. After emailing multiple times about how I was evacuating fecus he said if I was interested he would give me a name of a surgeon who performs sigmoid colon resection. After reading some articles I was afraid and canceled the appt w surgeon. I am elderly woman.

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Try changing your diet, dfloyd1133, surgery is crazy for a bit of mucus! It could be an IBS-type symptom from a particular food item.

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Profile picture for dfloyd1133 @dfloyd1133

Is this group still open. I couldn't find on facebook. how will I know if I'm in the group?

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You must be in because you’re included in this conversation! 👍

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I've posted here before given I have a redundant colon, and am going through a tough time right now with a lot of discomfort/constipation/bloating. I am cycling through the typical medications without any lasting relief, and feel like I just can't get completely emptied out. For example, I had a salad from crisp and green tonight and feel like I had a 5 course meal. My GI brought up the possibility of having an epigastric enema if nothing else seems to clean me out. My diagnosis came when I had take a double colonoscopy prep solution and still had to be cleaned out before the procedure. Also, the gas I pass with this....it clears the room the smell is so potent. Which again I don't have when things are going well. Any feedback on getting this kind of enema?

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Profile picture for tonytenor @tonytenor

Hello! My name is Tony. I was Dx with a redundant colon back in 2013. Things have gotten progressively worse over the past nine years. Currently I have severe bloating, abd pain, constipation and weight gain. I have a high fiber vegan diet and exercise daily - usually power walking 4-6 miles per day. Has anyone else, with a redundant colon, experienced an issue with weight gain? The bloating and abd pain is bad enough, but to now have a weight issue is really quite distressing. Any thoughts?

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I know this is old, but I am wfpb and my redundant colon didn't bother me at all(3-4 bowel movements a day) until February 2022. My wfpb doctor thinks my colon twisted and turned to a different position. I had excruciating pain for a solid 2 months. My high fiber diet has done nothing for me. The only time I'm good is if I consistently eat 2-3 servings of fruit a day. I've gained 30 lbs over the last almost 3 years. Part of the gain is from the colon issue and part of it is from eating more foods with oil.

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Profile picture for mskaren2009 @mskaren2009

I know this is old, but I am wfpb and my redundant colon didn't bother me at all(3-4 bowel movements a day) until February 2022. My wfpb doctor thinks my colon twisted and turned to a different position. I had excruciating pain for a solid 2 months. My high fiber diet has done nothing for me. The only time I'm good is if I consistently eat 2-3 servings of fruit a day. I've gained 30 lbs over the last almost 3 years. Part of the gain is from the colon issue and part of it is from eating more foods with oil.

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mskaren2009,

What helps me is slippery elm inner bark powder. I eat some with every meal and snack by dissolving it in warm or hot liquid, adding to pancakes or hot cereal, etc.

My dose is 1/8 teaspoon each time, but I am sensitive to everything and always use less than others.

Give it a try if you like. It supports the mucosa and that why I think I benefit. It helps stool move through my severely redundant colon. Note that I have no pain to date; I am just extremely constipation-prone.

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