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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@shelly123

Hi all, I’ve spent the last hour reading through these comments and feel both relieved and overwhelmed. I ended up finding this page by accident through an extensive google search of all the typical symptoms you could guess. My apologies for the lengthy post as I usually stay bottled up about this issue. I am a 29 yo female who’s dealt with “stomach issues” for as long as as I can remember. In all other aspects I am healthy and monitor my food intake/water intake. I’m naturally thin at under 110lbs but have been unable to really gain healthy weight due to life-long stomach aches and pains such as bloating/constipation/diarrhea that can take days/weeks to recover from. I’m personally and professionally active, despise soda, and drink one modest cup of coffee a day and the occasional glass of wine at dinner. For years I worked through abdominal pain and convinced myself I would grow out of my symptoms. It was last year that it became clear this would not be an option so I went to my PCP. She ordered a blood panel, CT scan, and referred me for a colonoscopy. I have no food allergies or intolerances and had no blockage at the time of the scan. Naturally the colonoscopy was next. Immediately after I woke up from the colonoscopy I was in severe pain and was told they had administered more anesthesia than planned due to the extremely complicated and unexpectedly long procedure. Due to this excruciating pain I was also given fentanyl intravenously, all while the DR told me I had the “most tortured colon” he had ever seen. That along with hemorrhoids. I don’t recall him using the word redundant. They wanted to take me for imaging after the procedure for what I assume was out of both precaution and fear that something may have gotten nicked during the scope. I declined imaging (afraid of the potential cost after already spending so much money for previous appts) and opted to stay awhile for monitoring before eventually being sent home. The days after that procedure were full of discomfort to say the least..

It has been several months since then and I have little relief and worsening symptoms that I almost hate to talk about because of the graphicness. At times I have dark black dots everywhere in my stool, bright red blood in the toilet bowl from the hemorrhoids and excruciating sharp pain all over my abdomen. In the past it was not uncommon for me to have severe pain and end up in the bathroom for extended periods of time and also resorting to sleeping in bathroom. Lately though I’m getting these episodes at the worst times and feel helpless in preventing them. Very recently at work, seemingly out of no where, I started feeling a very bad stomach ache coming on. Almost immediately I had to run to the bathroom and while making my way down the hall I became extremely lightheaded with blurry vision and collapsed in the stall before hoisting myself up to the toilet. It certainly felt like a massive drop in BP. I then sweat through all my clothes in a matter of seconds followed by the usual crazy cramping/pain, diarrhea, etc. That happened again days later while in the grocery store. It is very embarrassing and physically and emotionally draining. I had always assumed I possibly had IBS/IBD or Crohns and never heard of a torturous colon before my colonoscopy. I was unaware that could be the culprit of my symptoms since childhood. The most recent symptom that just started a year ago has been an absurd amount of reflux/indigestion. The first time it happened I thought I was having a panic attack because I had been lucky enough to never have any sort of reflux or indigestion issues and could not recognize what was going on. Now a year later it seems that no matter what I eat, or how little I eat, my esophagus reacts within minutes of “finishing a meal”.

I have been trying the FODMAP diet, benefiber powder, lots of H2O, and managing stress. Through this post I’ve heard about an antidepressant drug that seemingly helps with gut issues and would find more resources about that helpful. I have tried to solve pain without medication and my system does not handle laxatives well at all, but I feel I am running out of patience, options, and hope. My condition is not as severe as some that I have read about here (my heart goes out to those recovering from life-altering surgeries) but similar to most others this has now become difficult to manage and affects my daily life.

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@shelly123 My goodness, Shelly, you are so young and having so much serious trouble. I'm very sad for you. I truly wish you could have put your financial concerns aside and had that further scan following the (botched?) colonoscopy. I certainly understand your financial plight at that time. There was not much choice for you. It's criminal that many Americans are paying for their health care needs. That's why I felt so compelled to respond to your post. It makes me so angry to know of all this suffering. I've said this before, but I'm so grateful to live in Canada where all heath care is free, including CT scans, MRI, hospitalizations, doctor and specialist fees, everything. The only costs I have are for dental or optometry, and I feel so hard done by! Even then, some lucky Canadians have those costs covered through employer plans or private insurance, if they can afford that. I don't mean to rub it in. I just WISH there was a way to help you.
My story is similar to yours, as far as the pain, diarrhea, and especially the bathroom blackouts. I'm currently being investigated by a G.I. questioning Ulcerative Colitis, Crohns, etc. He wants to do a colonoscopy but wants me stable at first because i'm a serious risk for invasive procedures due to all my various issues - Giant Cell Arteritis, Diabetes, strokes, recent blood clot, recent TIA. No need to elaborate further. I wish you well, Shelly, and I know you'll get help and support on this site. My best to you, Laurie.

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Hello,
Just back from a colonoscopy that practically didn't happen, and found this site that I hope may shed some light on my situation. This was my 2nd ever colonoscopy, first when 50 and todays at 59. Different doctors. Have family history of colon cancer, Mother passed at 60 and sister dx at 61 who was treated and is now cancer free. Todays colonoscopy was aborted due to redundant colon. Never knew I had this dx. Anyone know if a colon can become redundant over time, or would it have had to be redundant at first (successful) colonoscopy? A barium test was suggested for next screening attempt, which I believe will be in a couple of weeks or thereabouts, but on reading about that , it doesn't seem as reliable in finding all potential polyps. Anyone with a dx of redundant colon go on to have a successful colonoscopy or what measures were taken to ensure full colon was screened for cancer? TIA

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I have had several successful colonoscopy's before my last one, when I was diagnosed with a redundant, ridged, fixed colon. So yes, a redundant colon can be caused over time. I'm assuming your constipated a lot. It's the constipation that causes your colon to lengthen to hold all the waste. Mine too went from fine, to not so fine. :o( When I had my last colonoscopy they used a children's size scope. You could ask if that would work for you. It still was difficult and took them a long time. Hopefully, that could be an answer for you. Good luck!

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@fifibee

Hello,
Just back from a colonoscopy that practically didn't happen, and found this site that I hope may shed some light on my situation. This was my 2nd ever colonoscopy, first when 50 and todays at 59. Different doctors. Have family history of colon cancer, Mother passed at 60 and sister dx at 61 who was treated and is now cancer free. Todays colonoscopy was aborted due to redundant colon. Never knew I had this dx. Anyone know if a colon can become redundant over time, or would it have had to be redundant at first (successful) colonoscopy? A barium test was suggested for next screening attempt, which I believe will be in a couple of weeks or thereabouts, but on reading about that , it doesn't seem as reliable in finding all potential polyps. Anyone with a dx of redundant colon go on to have a successful colonoscopy or what measures were taken to ensure full colon was screened for cancer? TIA

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A CT colonography will find polyps.

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Me. My first colonoscopy in 2006 was incomplete bc of "very redundant sigmoid colon." My third colonoscopy doc told me my "right colon" was redundant and that I have a short rectum. I have had severe constipation for 19 years. Doctors fob me off for pelvic floor PT, various fiber and miralax regimens, and most recently I paid $1500 for three PT visits to train my anal sphincter to relax. I'm aces at relaxing it but there's slow transit, so a relaxed anus doesn't do much but wait.....and wait.....and wait.

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@fighter

I don't know what I have really, but my old gastro told me I had an extra long colon. About 2 years ago my gut changed. Long story short I did try to Fodmap diet, but really didn't think too many foods are the culprit. I, too, have had chronic constipation, since I was a kid. I did try Linzess, and it was working, but then stopped. Magnesium 400 mg does nothing for me. I did a Fleet enema once, which really didn't work, and made me sick--legs shaking & felt like I was going to pass out. I was taking 3 Citrucel tablets a day, but that doesn't do much of anything. I think I took benefiter, metamucil in the past as well. Now I take Senokot-S every few days, which helps. My old gastro told me to buy Atrantil off the web. I took that for quite some time, and I believe it did help with my bloating. Might be something others could try for bloating & gas.

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Like you, I have tried all sorts of things that work initially and then just don't work at all. Trulance was one thing, and psyllium fiber alternating with miralax was the other. Mkralax turns everything to toothpaste and there's always the urgency as a result. The endless wiping... and that is no way to live!

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@shayshay

Causes back pain too.

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Indeed! Low back is howling right now due to all that waste packed into my narrow pelvis.

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@virginia44

Kris, thanks for the info. I had a discussion on another thread about how going off of estrogen replacement effects the mucosa in the colon. I also researched it online, and there are a couple of solid studies on it. My problems started right about the time my doc took me off estrogen. I've had a tortuous colon since at least 2008, but problems just started 2 years ago...exactly when I went off estrogen. Going to ask the doc to let me go back on estrogen cream, at least.

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This makes me wonder if Femara is making my Tzc and IBS-C so much more severe. Femara prevents my body from making estrogen by aromatase conversion.

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@carcar

Is this the same condition as Diverticulitis?

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No, tortuous colon is extra loops and lengths of colon. Diverticulitis is pockets along the colon that fill with seeds or popcorn kernels and get inflamed. And I saw a small study that showed that TC and diverticulitis rarely occur in the same person, but on this board I have seen several people say they have both.

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I also have long torturous colon. GI surgeon noted “the colonoscopy was technically difficult & complex due to restricted mobility, a redundant colon, significant looping & a torturous colon”.
That was in ‘18.
They referred to patient (me) with severe systemic disease...doesn’t sound promising .

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