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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 trathfon62
trathfon62 | @trathfon62 | Feb 27, 2023
In reply to @kjn72 "JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago..." + (show)
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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Hi,
I had a lot of joint pain before I changed my diet. It seemed like the pain moved around my body at times. I know a gluten free diet seems extreme to a lot of people but for me it’s not a fad. Trust me, I would love to eat the gluten. It’s sooo much easier! I think a low sugar is just as important for inflammation in the body. I am 62 years old, 5’4” and found out I have Osteoporosis this year. I only have occasional back and hand pain in the morning when I wake up then no pain after that. I am so afraid to take the medicine ( Evenity) because it says it can cause severe joint pain and a whole load of other scary symptoms. I try to exercise six days a week now and eat more protein. It’s becoming a full time just just staying healthy. I do believe the gut is the key to our health so I really strive for a healthy gut. I hope you figure out your joint pain issue as I know it can be a worry. I just had to do what seemed to help me. I feel better than I did 7 years ago. Low levels of Vitamin D3 is also linked to joint pain so make sure your D3 is in a good range ( around 50) That was huge for me. I have all of my daughters taking a multivitamin with D3. They tend not to get all of their vitamins from what they eat. They said they feel much better. It seems the younger generation is getting symptoms sooner than we did. Good luck with everything!

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Profile picture for md123
md123 | @md123 | Feb 27, 2023
In reply to @mothermary1 "Miralax makes me extremely sick. I also have no gallbladder and ask to get labs to..." + (show)
Profile picture for Joanne Narna @mothermary1

Miralax makes me extremely sick. I also have no gallbladder and ask to get labs to check enzyme levels, test amylace and lipase and do a fecal fat test on my stool but nope, they just think surgery. I have 4 pancreatic cysts that are watched yearly with an mri and report always states backed up bile ducts. Thanks for your response..Joanne

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Wow, I used to have a lot of problems with Miralax until I started taking Cholacol, which I think anyone missing a gallbladder should be taking, and the Zenwise. It was amazing. I went from feeling awful .foe years to feeling great all within 24 hours. Everyone is different and I am sure not everyone will have my success, but I wish you well.

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joansmurphy | @joansmurphy | Feb 28, 2023
In reply to @kjn72 "JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago..." + (show)
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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I noticed this discussion and wanted to comment. A friend of mine, at about age 20, suddenly had a big problem with constipation. Between 20 & 35, she suffered with it terribly to the point that she hated to eat. She went to so many doctors for help. Finally one of the big NYC medical centers, had her defecate, after taking barium, while filming the process. As embarrassing as it was, she had been suffering so long, she was ready to try anything. They found a small section of her bowel didn’t do anything to move the stool along. After surgery to remove that section, she never had a problem again. That was around 25 years ago. Hope this story helps someone.

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jules10 | @jules10 | Mar 1, 2023
In reply to @kjn72 "JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago..." + (show)
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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I’m so sorry you are having trouble finding the right answers. I have diverticulosis and now after a most embarrassing enema X-ray I was told I also have a redundant colon. I have worked hard to find what works for me. Fill a pitcher with 64oz of water to make sure I get my water in. Miralax every morning! My savior. Too much fiber does not work for me. I’m 70, walk, general easy yoga routine, tummy digestive rubs taught to me by PT therapist, do PT when things are flared as I also get back pain when my colon is unhappy. I’m learning on my own what I can and cannot eat and quit tryin to convince the drs that fiber is not helpful. I do lots of berries that I digest really well. My sigmoid colon has narrowed. Now they want to remove the diseased section. I pretty much gave constant left side pain. I hope you can get some relief. Digestive challenges can be so individual with no one size fits all fix.

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Profile picture for farleydove
farleydove | @farleydove | Mar 1, 2023
In reply to @jcarndt "I have Crohn's disease and a redundant/tortuous colon. I have had two bowel resections, one in..." + (show)
Profile picture for Keith Moon @jcarndt

I have Crohn's disease and a redundant/tortuous colon. I have had two bowel resections, one in 2007 and again in 2015, but constipation was never a problem for me until after the second surgery. I've had the Crohn's disease for many years, but did not even know about the redundant colon until a few years ago. I was reading the report after one of many colonoscopies, and saw those words for the first time. I asked the doctor about it, and he said it was nothing to be concerned about. But I am concerned about it. After about three minutes of research, I realized that there was a direct connection between my redundant colon, and my daily battle with constipation and bloating. I go back and forth between trying to get my bowels moving, and spending the whole next day in the bathroom. Sometimes I feel as though there is a lot of trapped gas in the kinks and loops. The doctors haven't offered much advice on any of this. When I asked if the redundant colon was the cause of the chronic constipation, the answer was "maybe".........
Anyway, I accidentally landed here while once again searching for ways to manage this situation, or at least make it a bit more tolerable. The posts I have read here today have been very helpful. I think I will give the Sennokot a try, because my daily Miralax just isn't doing the job, and I don't even want to think about Milk of Magnesia anymore. It sounds like I need to get more fiber as well. But I'm a little concerned about getting too much because of the Crohns. All I have to do is eat a bowl of oatmeal or a banana, and I'm all jammed up. If any of you have Crohn's and redundant colon, I'm open to any ideas. Or even if you don't have Crohn's. I'm also wondering if there are any exercises that would help.

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I'm just now realizing this is what my problem has been for years. It feels very serious with not a lot of solutions. I too found out about mine via the colonoscopy results.
Sorry, I don't have answers. Yes, Senna can help for sure.
I have to use senna, Miralax, and sometimes fleet. For really bad episodes I add milk of magnesia, which is disgusting.

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farleydove | @farleydove | Mar 1, 2023
In reply to @branckerd "I had 1 month ago It is not an easy surgery and is a major surgery..." + (show)
Profile picture for branckerd @branckerd

I had 1 month ago It is not an easy surgery and is a major surgery If you have other option I would do option I will tell u my dr said it will take 2 months to be 80 percent myself It’s been 1 month for me I won’t lie to anyone it’s not an easy surgery

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Thank you for your insight

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farleydove | @farleydove | Mar 1, 2023

Thank you so much for your comments. I replied to another comment that I'm just now realizing this is what I e even struggling with for years.

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farleydove | @farleydove | Mar 1, 2023
In reply to @teresagiselle "I have this condition and used to have problems with constipation, bloating and abdominal discomfort. I..." + (show)
Profile picture for teresagiselle @teresagiselle

I have this condition and used to have problems with constipation, bloating and abdominal discomfort. I tried taking a Metamucil-type (generic) fiber powder in water each day and it's made all the difference! I have regular bowel movements and feel greet. My GI doc has me undergo a colonoscopy every 18 months, as he's found a number of polyps and I have a family history of colon cancer.

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Thank you for the input. I have this condition. For some reason I tried Metamucil years ago and I didn't like it- I didn't think it helped, so I stopped trying. After reading your comments, I think I'll try it again, as this is really messing with my health. Thanks.

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farleydove | @farleydove | Mar 1, 2023
In reply to @amyvb "I have had IBS-C issues for as long as I can remember, but about 7 years..." + (show)
Profile picture for amyvb @amyvb

I have had IBS-C issues for as long as I can remember, but about 7 years ago they became chronic to the point where I can go a week (or more) without any bowel movement if I'm not taking laxatives. I have had dozens of tests, and the only useful information I have received so far was from a visit to the Mayo clinic in Rochester a little over a year ago, where they discovered I have a "highly tortuous colon" and could barely complete a colonoscopy. The recommendations at that time included increasing my fiber, which doesn't help at all. Other tests have also revealed that I have a partially prolapsed lower colon, but not to the point where surgery would be a good idea. Taking fiber supplements makes me extremely bloated and becomes unbelievably painful, and Miralax makes me sick to my stomach and doesn't do too much to move things along. I've tried different things with my diet, and right now, I mostly eat white rice (brown is too hard to digest), vegetables, and small amounts of protein. I feel like i'm going a little crazy trying different things like eliminating dairy or other food restrictions, but I don't know what else to do. I completely avoid gluten. I've been very active my whole life...have run marathons and done lots of strength training and different types of endurance races, but recently I don't have the energy for the types of training that these events require. @karena65 Do you have a resource that you can share on the whole plant diet? Is there any other advice anyone can share?

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Karen- I'm also Karen. I feel for you because I'm having increased issues as well. I would not eat white rice - that can actually cause constipation?
I'm new to this group and even though I've struggled with this for years. I'm just now realizing what it is. Now I don't feel crazy.

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dedhambeth | @dedhambeth | Mar 2, 2023
In reply to @farleydove "Thank you for the input. I have this condition. For some reason I tried Metamucil years..." + (show)
Profile picture for farleydove @farleydove

Thank you for the input. I have this condition. For some reason I tried Metamucil years ago and I didn't like it- I didn't think it helped, so I stopped trying. After reading your comments, I think I'll try it again, as this is really messing with my health. Thanks.

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I too found out through a colonoscopy. Very torturous and redundant. I have found Metamucil plus vitamins with a hefty glass of water and sitting with coffee each morning keeps me on a regular schedule. Along with exercise.

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