Anyone else have a Redundant / Tortuous Colon?

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. 😪💕

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.

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.

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.

Oh my heart goes out to you all!! I have battled constipation all my life.. I remember my Mother giving me enemas as a 5 year old..(and running from the sight of her coming.....!!) So.. I even got so backed up, I had to take an ambulance to a hospital and they gave me a lactulose enema (not good.. intolerant of milk).. the next time I almost died.. went into a "sweat out" and sweated out so much fluid..completey soaked.. called the ambulance .. blood pressure 60 over 40 and it took him 10 min in the driveway to find a vein to start a drip.. used 2 bads on the 45 min drive to the hospital.. so constipation is something I have deep concerns over.. all that said.. I was diagnosed with a tortuous colon last fall.. and was referred to a surgeon..but 15 days prior.. I began to use the potty.. 3-5 times a day.. and continue to do so.. since Oct 15th 2024..I'm 71 now.. (I've been hospitalized atleast 3 times for colitis..) so.. the take away..I do use Trulance ..and Miralax (sometimes twice a day) and drink lots of water.. and drink 2 Vanilla plant based Ensures a day (5mg fava pea fiber) and eat 1 Thomas multi grain English muffin ..8 grams fiber a day..have to really watch what I eat.. hiatal hernia, gastritis, GERD..I feel your agony!! Not going to get "preachy here.. I attribute my bowel change to standing in faith.. the surgeon said "I don't know what you're doing.. biofeed back or what ever..but it's working..I said "The Word works"..still standing in faith for complete healing manifestation of digestive system..I hope some of these things might help someone else.. constipation is nothing to be scoffed at..it's real and it's painful in so many ways.. anxiety.. the whole thing.. I'll pray for you all!!

I was just diagnosed with a redundant or torturous colon. I also have a hiatal hernia, esophagus motility issues, and acid reflux. What I have discovered is that there is no medications, supplements, or diet that will totally correct these issues. I quit taking PPI inhibitors because of the recently released study that they can cause a 30% chance of early onset dementia and I have a family history of that. So, I have been left with trying to figure all this out on my own. My Gastroenterologist prescribed heavy doses of Miralax to clean me out and said to take 1 capful, three times a day for maintenance. Well, that was awful! I was having accidents (if you know what I mean) so I had to stop it. Then I read on this blog that someone said a supplement called Cleanse More helped them (magnesium supplement) so I asked my doctor about it and he said it was safe to take and told me to take 2 capsules every other day. That was touch and go. Two capsules seemed to be too much and one wasn't enough so right now I just started back on 1 capful of Miralax once a day and two Cleanse More capsules every other day. We'll see what happens. Regarding the high-fiber diet, I have read conflicting reports and my doctor told me that a low-fiber diet is better for this condition. High-fiber foods will cause too much bulk and will be harder to pass through. I have also seen a surgeon regarding the colon issue and he said surgery is a last resort but to come back to see him if I cannot get a handle on this. It is so confusing trying to figure all this out!

would love the recipe for amaranth to help with chronic constipation. Nothing I eat or drink helps-my doctor said I was beyond diet. But would like to try your recipe rather than take trulance or linzess.