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 lesliejones @lesliejones

Hi, I have a torturous colon and have had bouts of constipation, some diarrhea, stomach pain and nausea. I am taking Konsyl Daily Psyllium fiber capsules, Florastor Probiotic, and MiraLax when constipated for a few days. I take ondansetron for nausea. (Prescription). About 5 years ago I was diagnosed with SIBO, but that was treated with a special antibiotic and was on a strict diet. That is gone now. I took Iberogast which helps with motility last spring…was great for awhile, but ended up with diarrhea. I recently was constipated for 6 days…that was scary, but finally was able to have a bowel movement. Now I am being careful and making sure I am able to go at least every 3 days…though, my bowel movements are round pebbles, but at least I am going. I do drink coffee every day, but had not heard that it is constipating. I will try to avoid it. I am 77 years old and do not want to have surgery. I am very tired of the symptoms and not feeling well and looking for a bathroom. Trying to enjoy life, but with this it is not easy….

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I do belly message every morning, take slo-Mag twice a day, and Acacia Powder Fiber. Also use flaxseed meal and chia seeds in my food. If I get constipated I use magnesium gummies to help. I am 70 years old.

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Profile picture for vicscats @vicscats

I have it too now that I’m older I can barely manage this condition
Lots of twisting and what seems like temporary blocksages some lasting a couple very painful hits
Has anyone else had this? I asked dr why the can’t just take some out?
Vicki

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Painful hours

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I have it too now that I’m older I can barely manage this condition
Lots of twisting and what seems like temporary blocksages some lasting a couple very painful hits
Has anyone else had this? I asked dr why the can’t just take some out?
Vicki

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Profile picture for lesliejones @lesliejones

Hi, I have a torturous colon and have had bouts of constipation, some diarrhea, stomach pain and nausea. I am taking Konsyl Daily Psyllium fiber capsules, Florastor Probiotic, and MiraLax when constipated for a few days. I take ondansetron for nausea. (Prescription). About 5 years ago I was diagnosed with SIBO, but that was treated with a special antibiotic and was on a strict diet. That is gone now. I took Iberogast which helps with motility last spring…was great for awhile, but ended up with diarrhea. I recently was constipated for 6 days…that was scary, but finally was able to have a bowel movement. Now I am being careful and making sure I am able to go at least every 3 days…though, my bowel movements are round pebbles, but at least I am going. I do drink coffee every day, but had not heard that it is constipating. I will try to avoid it. I am 77 years old and do not want to have surgery. I am very tired of the symptoms and not feeling well and looking for a bathroom. Trying to enjoy life, but with this it is not easy….

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I realize we are not alone. There are a lot of us out there. I to have tortuous colon I believe since birth. This condition took so much out of my life. I suffered not only from this condition but painful periods. I finally found out after suffering so much pain, I had two huge dermoid tumors on both ovaries . I had surgery to remove one ovary and 7/8 of the other. I could go on but I have so much sympathy and caring for people going through this. I am now 72.

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Profile picture for dougmcougars @dougmcougars

I have the same problem and can go for a week without going. Fortunately I don’t have any stomach pain. Have you noticed if crackers or dense crusty bread makes it worse? Those will cause bloating and mucous discharge and really bad constipation to me.

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Not sure…I have to be aware of that…

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I have the same problem and can go for a week without going. Fortunately I don’t have any stomach pain. Have you noticed if crackers or dense crusty bread makes it worse? Those will cause bloating and mucous discharge and really bad constipation to me.

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Profile picture for eppie @eppie

Even though you feel like a burden to your mom, as I feel I am with my family and friends (especially my husband) too, they keep reminding me that they help and take care of me because that is what families and friends do. I feel tremendous guilt at times as well, but I try to remind myself that if it were the other way around I would do whatever it takes to be there for my family as well. Feeling guilt is a useless emotion. None of us are intentionally being sick or seeking attention.

People also tend to give advice or say stupid things like it's stress because they want to help and they don't know what else to say. I know they think these comments will make us feel better, when in fact it has the opposite effect. I have become very out spoken lately and started telling people that when Im not feeling well, and I tell you about my issues of the day, I'm just venting. I add that i'm not looking for an answer or advice. If I'm not asking for help I really don't want it. I just want you to listen and not say anything because there's nothing to say. A simple i'm sorry you're going through this is all that needs to be said. I have found this to be a tremendous help, especially with my mother. I have to remind her often that I just want her to listen and not give advice, but being straight forward has helped a lot. I don't know your relationship, but it's worth a shot for you to speak up that it bothers you when she's says things like it's stress.

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My husband thinks he knows what is best for me…he thinks I need to be on some kind of a special diet. Really he doesn’t understand this tortuous colon. I think I will try to eliminate coffee…I can’t imagine that that is constipating me, but I will try that. I wonder if tea is better…

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Hi, I have a torturous colon and have had bouts of constipation, some diarrhea, stomach pain and nausea. I am taking Konsyl Daily Psyllium fiber capsules, Florastor Probiotic, and MiraLax when constipated for a few days. I take ondansetron for nausea. (Prescription). About 5 years ago I was diagnosed with SIBO, but that was treated with a special antibiotic and was on a strict diet. That is gone now. I took Iberogast which helps with motility last spring…was great for awhile, but ended up with diarrhea. I recently was constipated for 6 days…that was scary, but finally was able to have a bowel movement. Now I am being careful and making sure I am able to go at least every 3 days…though, my bowel movements are round pebbles, but at least I am going. I do drink coffee every day, but had not heard that it is constipating. I will try to avoid it. I am 77 years old and do not want to have surgery. I am very tired of the symptoms and not feeling well and looking for a bathroom. Trying to enjoy life, but with this it is not easy….

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Profile picture for marmoldav @marmoldav

Oh cool. I will try sleeping on my left side. I did finally hear from the doctor. And I have to have a colonoscopy every 5 years instead of every 10 years. The thing is that type of polyp that I mentioned, that's the type that has the propensity to turn into cancer. There's two types of polyps that they could find. One will always be benign and never turn into cancer and then the other one is the tubular adenoma. Tubular adenomas are exactly what they're looking for when they do colonoscopies. Those are the ones that are going to eventually become cancer and because of that I have to go every 5 years instead of 10. Also from what I've read redundant colon makes colonoscopies difficult. And actually in the report of my colonoscopy the doctor did indicate that it was difficult. So the fact that they're more difficult and that I have to have them more often is a little bit concerning

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I have a tortuous redundant colon with severe constipation. My gastro at John Hopkins, Baltimore indicated I have one of the worst tortuous colons she has seen in her career. Requiring body replacement and exterior stomach manipulation to get through my colon. I suffer from extreme bouts with debilitating vomiting lasting three to four days. I have yet to find a successful regiment. I can say that while sleeping on your left side does aid the process, the constipation requires a multi angel approach to becoming healthy. Including life style, diet and stress changes. As well as otc medications and for some prescription medications as well. For those who have the added joy of abdominal pain, have you found anything that works? I was recently prescribed 5 days of low dose Prednisone for something non related. The steroid caused several days of diarrhea. As an added bonus I was able to empty my bowels. A welcomed reprieve. Curious what works for others in addition the standard recommended changes...

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Profile picture for marmoldav @marmoldav

Hello. I just had my first colonoscopy and the report on it says I have a tortuous colon. For some time now I have complained to my doctor that I get full after eating very little. I had loads of test done that tested my stomach and at what speed it emptied. They said everything was fine. I still have the problem and, to be honest, it's worse since the colonoscopy. I have had no contact from the doctor since the colonoscopy about the results (tortuous colon and a tubular adenoma) which I find strange and if I don't here soon I'm going to ask my primary care doctor what to do. I'm wondering if the tortuous colon is the cause for the full feeling and how it will effect future colonoscopies because with the tubular adenoma I think I'm gonna need colonoscopy more than every 10 years. If anyone has a similar experience I'd like to hear about it.

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I was diagnosed with tortuous colon 2 years ago. My symptoms included constipation all week then having stomach cramps, vomiting and soft stools until I was empty.

Before I knew I had tortuous colon, I was treated for SIBO, small bowel bacterial overgrowth, many times which helps the symptoms a little. I was also positive for slow stomach emptying. The doctor was also considering ibs.
After I was diagnosed with redundant colon, my doctor changed my treatment and I have had some success. (My redundancy is throughout the colon, not just the sigmoid)

I live in Israel, and I am taking a medicine that is not available in the US, called Resolor. It is a pro kinetic. Her theory is that since everything gets backed up then my body tries hard to get rid of it all with through a big cramping vomiting episode.

The resolor helps me make a few movements a week, I've had no more cramps and vomiting, stools still a little softish half the time. But at least I can feel comfortable going outside the house and not worried about a bathroom episode.

I'm also to use micro enemas if I feel it ready to go, but I am not able to go.

I had asked her about if a medicine like Resolor is available in the US, (she did some training in Boston). She said Resolor is not, but there is a medicine that is part pro kinetic and partly to absorb moisture, which is not good if you're constipated all the time.

Maybe there is something available like Resolor now in America.

Last note, the Dr asked the surgical team at the hospital she works at, Rambam, and they did not recommend surgery, saying its not guaranteed to solve all the problem and it's a big surgery and that they recommend continueing to learn to manage my condition with my doctor.

All the best!

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