1. < Digestive Health

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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les2436 | @les2436 | Sep 26, 2019

Hi, I have had cancer and I have Heart Failure, and redundant colon in 3 areas, by far the worst condition I have ever had. I'm pleading to any doctors out there that can help all of us. Quality of Life gone....HELP

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1 reply
les2436 | @les2436 | Sep 26, 2019

Well guys, The surgeon consultation didn't go as well as I hoped for. Doctor was quick and said either threat with medication, meaning housebound at 53 years young. or complete colon removal. I have redundant colon in three spots transverse, desending, and sigmoid. Stopped going on my own. Looking into 2nd surgeon. if I can, On Medicaid in Florida, not good coverage, submitted my financial assistance to Mayo Clinic. Well see. Keep you'all posted. Good Night

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les2436 | @les2436 | Sep 26, 2019
In reply to @stuckonu "Hi les, since you asked for “ any thoughts on surgery “ I will first say..." + (show)
@stuckonu

Hi les, since you asked for “ any thoughts on surgery “ I will first say that each case is different. In my case, while hospitalized the doctor assigned to me cane in with my nurse who knew me from being my nurse for three days. She was standing behind to doctor who came in and without much emotion said to me: we think that this small bowel obstruction is do to an adhesion from your appendectomy but we don’t know for sure. We would like to do exploratory surgery but need your approval first. My nurse was shaking her head in the “ NO “ direction. So I told the doctor no not at this time. After the doctor was gone the nurse came back and told me why she was saying no. She told me that she has been following every aspect of my stay and since the doctor said they didn’t know for sure and it was “ exploratory surgery “ she suggested that I modify my diet and to keep a journal of what goes in and what comes out and take notes on the details of all things that might be telling. I thought that she made sense and that’s what I’ve been doing.
Today I’m going for an X-ray and ultrasound. That this is scheduled almost two weeks after the episode seems to not make sense but they tell me it doesn’t matter if I’m not having an attack.
I’m doing as much research before I agree to surgery. The research led me to this site

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Hello, I'm going for consultation only. Will ask for ultrasound? I'm on month 8-10 . A lot of research. Not going poop on my own. Keep in touch. Have a great day

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stuckonu | @stuckonu | Sep 26, 2019
In reply to @les2436 "Hi it's Lesley 2436. Finally seeing colon surgeon Thursday. Does anyone have thoughts on surgery. I..." + (show)
@les2436

Hi it's Lesley 2436. Finally seeing colon surgeon Thursday. Does anyone have thoughts on surgery. I have stopped poop normally. Only strong laxatives empty me.

Jump to this post

Hi les, since you asked for “ any thoughts on surgery “ I will first say that each case is different. In my case, while hospitalized the doctor assigned to me cane in with my nurse who knew me from being my nurse for three days. She was standing behind to doctor who came in and without much emotion said to me: we think that this small bowel obstruction is do to an adhesion from your appendectomy but we don’t know for sure. We would like to do exploratory surgery but need your approval first. My nurse was shaking her head in the “ NO “ direction. So I told the doctor no not at this time. After the doctor was gone the nurse came back and told me why she was saying no. She told me that she has been following every aspect of my stay and since the doctor said they didn’t know for sure and it was “ exploratory surgery “ she suggested that I modify my diet and to keep a journal of what goes in and what comes out and take notes on the details of all things that might be telling. I thought that she made sense and that’s what I’ve been doing.
Today I’m going for an X-ray and ultrasound. That this is scheduled almost two weeks after the episode seems to not make sense but they tell me it doesn’t matter if I’m not having an attack.
I’m doing as much research before I agree to surgery. The research led me to this site

REPLY
2 replies
nova1976 | @nova1976 | Sep 26, 2019

I've had several surgeries for small intestine blockages after RNY bypass. Mostly caused by adhesions The blockages continued. The head of bariatric surgery at columbia hospital in NYC did the surgery himself and found involulus colon. I probably misspelled it. It's where the colon is twisted, pushed into the area of abdomin where's it should not be and telescoped into itself. He took out piece of colon, Cecil valve, piece of small intestine and appendix
That solve blockage and constipation problem but brought about Explosive diarrea (SIBO). Working that out now Feels like adhesions coming back now
But that is for another day

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1 reply
les2436 | @les2436 | Sep 25, 2019

Hi it's Lesley 2436. Finally seeing colon surgeon Thursday. Does anyone have thoughts on surgery. I have stopped poop normally. Only strong laxatives empty me.

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1 reply
tiss | @tiss | Sep 23, 2019
In reply to @deedee1837 "I also had 18” of my colon removed 1 1/2 years ago. I wish I could..." + (show)
@deedee1837

I also had 18” of my colon removed 1 1/2 years ago. I wish I could say that there was a big improvement.

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Deedee, It took me a long time to feel like I was as recovered as I was going to get. Mine was an emergency surgery and the ascending colon was taken out including the ileocecal valve which has caused chronic SIBO. I take Xifaxan on a daily basis. Have you been checked for SIBO? Many people with chronic constipation have it.

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tiss | @tiss | Sep 23, 2019
In reply to @manierob "tiss@tiss Where do you get the 800-1000 mg. of magnesium?" + (show)
@manierob

tiss@tiss Where do you get the 800-1000 mg. of magnesium?

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I use Natures Way magnesium complex. I buy them from Vitacost.

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sandyabbey | @sandyabbey | Sep 19, 2019
In reply to @ahcasey13 "I’ve had horrible abdominal pain, bloating, diarrhea, constipation, vomiting and bleeding for years (16 years). I’ve..." + (show)
@ahcasey13

I’ve had horrible abdominal pain, bloating, diarrhea, constipation, vomiting and bleeding for years (16 years). I’ve had many colonoscopies, endoscopies, CTs, MRIs - basically you name it I’ve had it done .. 3 colonoscopies over the past 2 years multiple malignant carcinoid tumors were found and removed and I was told “don’t worry it’s a slow growing cancer”. My pain and symptoms never eased so for 16 years dr after dr told me the symptoms were because of cysts on my ovaries because of PCOS and because I was over weight. The gastrointestinal dr last year (I have since changed) neglected to tell me that my CT showed that I had football size masses on both ovaries - so I had a hysterectomy. Still my symptoms didn’t ease. I gave up and decided I just had to live with the pain and try to deal with it - I have extra clothes at work, in my car, in my purse. Fast forward to fall 2018 I begin fainting and losing weight I’ve lost 70lbs in a years. I had my 6th colonoscopy and endoscopy in 3 years last week (my blood work shows my iron, vitamin D, and vitamin B12 levels are depleted) my new gastrointestinal dr couldn’t complete my colonoscopy even though I did a 2 day prep. Endoscopy shows that my esophagus is constantly spasming and the opening to my stomach is small. Even without completing the colonoscopy it showed I have significant inflammatory bowel disease, an extremely “torturous” and spastic colon, severe IBS, and possible Crohns. I’m exhausted from the anemia along with all the colon issues and just being sick all the time. But mostly if drs would have taken the time to listen instead of just judging me as a “curvy” PCOS woman I could’ve gotten help before it got to this point. I don’t know where to turn now.

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I feel your pain. I hurt everyday. Can’t enjoy any good foods. I know some of these Drs think it’s just a part of aging. I’m 72 but I’m still a person. I had Cdiff this year & 4 relapses so in afraid of lots of things. I have a great GI & he probably saved my life with an FMT transplant. I’m either pooping too much or not pooping. It gets old. He said use miralax & I do when I have not pooped in a couple of days but it takes 3 days for it to work then I go 3 or 4 times a day for a few days. I don’t know what to do.

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