Anyone else have a Redundant / Tortuous Colon?
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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Great story here. So many times we look at everything else before looking at the Word.
Hello!
I just spent yet another whole day at the Emergency Room due to constipation. I have congenital tortuous and redundant colon (born that way!). I was told that “ tortuous and redundant” are sometimes used interchangeably and should not be. The reason is because one can have a very abnormally long colon (redundant) and also have a separate issue (tortuous), which means you have several loops and kinks in your bowel that makes digestion difficult.
This was what I was told recently. I’ve also been told that these words are used interchangeably bc they mean the same thing, an extra-long and twisted colon. I wish doctors would get it straight and all get on the same page with this bc I’ve been dealing with this since I’ve been a child, yet only diagnosed in the past couple years (I’m 60). I also suffered from endometriosis when I was of child-bearing years so it never occurred to me that these were separate issues- it took ten years and a dozen drs to finally get the endometriosis diagnosis! Now I’m trying to find a SPECIALIST in tortuous/ redundant colon (I’m not shouting with the all caps, simply emphasizing)
No gastrointestinal in my neck of the woods seems to know a thing about it. Some say “eat more fiber” but the type of fiber they tell me to eat, stops my colon in its tracks.
So, I thought I had a real bowel blockage and having a heart attack this week, it was horrific pain from between my shoulder blades to my left lower quadrant, almost felt like my ovary.
All my siblings (3), were born with the same condition. They are all much older than I am and have just lived with it. However, I would like to think the medical profession has come far enough since my siblings’ age (5-10+ yrs older), that they’ve done research on this condition!
When they discharged me from the hospital this week, they told me to eat a “low-residual diet”, but not make it a “lifestyle “, to see a “gastroenterologist”for further instructions!
Well, I was given an MRI to tell me what I already knew- I was “full of it” 🙂 and that I have a tortuous-redundant colon. Then given a soap-enema, which did nothing. Then sent home with an rx for that nasty huge jug of bowel-prep to drink… “clean yourself out and then make a follow -up with a gastroenterologist”.
Can’t wait to get the ER bill!
I did the bowel prep/flush until I was vomiting bile and running a temperature. I couldn’t finish it all but got 3/4 of it done.
I’m now bed-ridden from exhaustion and my insides are sore. Still have the pain that feels like it’s my ovary. I’ve been told before that that’s where the sigmoid is??? And that is usually the hardest area to get to flush out.
I’ve eaten white toast, ripe banana and some bland mashed potatoes today.
Still too much food, I already feel the bloat starting. But those were 3 things listed as “okay” on the Low-Residual Diet.
I’m feeling pretty discouraged and hope I’ll be able to find a specialist. I know there’s none in my area. So it would require travel.
I really empathize with all of you going through this bc I’ve dealt with it, like I said -my whole life, but just never knew what it was. I do know what I cannot eat and I keep a list of those things. Meat of any kind for one thing.
It sure makes it difficult when getting together with family around holidays.
I get tired of explaining the gruesome details of my colon and it falls on deaf ears anyway.
I guess I’m going to have to start bringing my own dishes to eat and stop worrying about offending others. At some point, we have to start taking care of ourselves even if others don’t get it.
They aren’t feeling the pain I’m in nor will they be paying my emergency room visit bill. 🙂
Praying all of you (and myself included) find solutions to this. I appreciate the wisdom you’ve shared.
My late husband had a tortuous colon. He ate healthy all of his life, but when he was in his 50’s he had to start taking Benefiber every day. That seemed to work for him and he didn’t have any problems until, when he was 72, he had sudden onset Lewy body dementia with Parkinson’s, and I cared for him for four years before he died of it, and his constipation got worse. (long story involving a temporary stay at a facility.) After that, I gave him half a capful of Miralax every day and it kept him regular. He never had to have surgery or anything, for which I’m thankful. I hope you can find something that works for you. I guess he was lucky, well, not the last part. 😪💕
Yes. Bring your own food or eat before you go. And they don't need a long explanation about why you don't eat what's served. People can't relate to your story, so generally tune you out- or label you as dramatic- overreacting. They care about you, they just can't relate.
Simply and kindly saying- I have digestive issues. I'm working with my doctors and I'm on a specific diet. Then change the subject to something pleasant and unrelated.
You are not accountable to anyone other than yourself.
Be well! 🙂
I have slow colon mobility. nothing works for me. I tried every fiber supplement and prescription know to man. My GI put me on an old fashioned remedy. Mineral Oil and Applesauce before bed. Please talk to your GI before use. I was bed for over a year because of this issue. I went from 128lbs to 93 lbs. The reason you feel full after eating is your colon does not empyt like it should and what is in your stomach has no where to go. I get horrible spasms beneath my ribs. Actually nothing you can do but keep your colon moving. The Gi is trying to keep me away from having surgery. Good Luck...
I have a tortuous colon. When I had a colonoscopy, the surgeon's nurse had to press extremely hard over my belly and when I woke up, I was black and blue there. The doc said he had to have help to get past the "twist".
Wow, I’ve never heard of that. I mean the bruising part. You must have quite a twist in there! I hope it doesn’t cause you too many problems. 💕
I also was told I have a moderately tortuous colon at my last colonoscopy. Was not given any info on it. I also have biliary dyskinesia. Not sure what is causing the early satiety feeling and bloating. I have never had a large abdomen until now. Have always had a problem with constipation so have been taking magnesium glycinate plus started taking MiraLAX. Wish there was a book on what to do or I guess it’s trial and error.
I have slow colon mobility. nothing works for me. I tried every fiber supplement and prescription know to man. My GI put me on an old fashioned remedy. Mineral Oil and Applesauce before bed. Please talk to your GI before use. I was bed for over a year because of this issue. I went from 128lbs to 93 lbs. The reason you feel full after eating is your colon does not empyt like it should and what is in your stomach has no where to go. I get horrible spasms beneath my ribs. Actually nothing you can do but keep your colon moving. The Gi is trying to keep me away from having surgery. Good Luck...
Prayers for you!! I was diagnosed with it too.. it's horrible!! I've been constipated all my life too.. I use Trulance and Miralax and Vanilla Plant based Ensure (5mg fiber) and Thomas multigrain English muffins.. 8 mg fiber.. and no sucralose.. sucralose will kill your good gut bacteria..also take VSL3 probiotics..I went from 135 lbs to 98 ..and now overweight at 155.. but better..was in the hospital several times for it.. got colitis and ambulanced to hospital with a B/P 60 over 40.. just couldn't pass anything.. up or out..and sweated out all my fluids!! They used to bags to hydrated me on the 45 mile drive to the hospital.. sometimes I Miralax twice a day..and really watch what I eat.. lots of water and Kinderlite (not Pedilight or Gatorade ..haves sucralose).. I'll be praying for you to find exactly what works for you..I got on my knees and cried out to God.. standing on the healing scriptures!! Lifting you up to the Lord for healing!!