1. < Digestive Health

Just diagnosed with tortuous colon

Posted by marmoldav @marmoldav, May 14, 2023

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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longcolin | @longcolin | Mar 18 12:10am
In reply to @researchmaven "I have IBS-C and a severely redundant colon. Before I got on top of it, I..." + (show)
@researchmaven

I have IBS-C and a severely redundant colon. Before I got on top of it, I had lost 25 lb and was technically underweight. This is what I learned works for me, through trial and error:

NOS: No grains (including no gluten) and no lactose. No legumes. Trace animal/milk fat. No beef or poultry. No fruit. No to most low and all high FODMAP foods as rated by the Monash University app. No coffee, caffeine, carbonation, most herbal teas. No to most vegetables. No sugar or most liquid natural sweeteners. No artificial sweetener. No hot pepper spice. No to large meals. No to bulking fiber supplements. No emotional stress (good emotions and bad emotions - however I am starting to see a GI psych to engage in a seven-week hypnosis program to cut the connection between my emotions and gut - they call it creating muscle memory. Recommended by my gastro doc.)

YESES: Green plantain flour, fresh green and hard plantains, pea protein isolate, potato starch, egg whites, low fat fish (tilapia, cod, shrimp, Lactaid nonfat milk, 1-2 heaping teaspoons of Lactaid cottage cheese/day. Brewers Yeast, Yeast, Chia (in moderation and well soaked), Swiss chard (no stems), tender kale (no stems), collard greens, common radish, the green part only of green onions, patty pan squash, mung bean sprouts, kobocha squash (Asian grocery), parsnip, fresh and dried herbs, olive oil (not a lot), Peppermint tea, lattes with my ingredients (I make a turmeric one), Rhubarb. Pure stevia. 1-3 raw brazil nuts. Walnuts for baking. A bit of maple syrup. Korean 100% sweet potato noodles. Maille dijon mustard, trace Mayo, A couple of olives, a few capers. Fody brand condiments, in small quanities. 0.5 teaspoon Bragg's apple cider vinegar with every meal (to give me more acid to digest my food -- a key change for me). 4-6 small meals a day. Always a warm drink or tap water to sip. My system doesn't work well without that. Mineral oil as a laxative, at bedtime, 3/8 - 1/2 teaspoon. Note: my gut is hypersensitive, so both the oil and vinegar are only needed in small quantities. Adequate sleep - lack of such disregulates my colonic processes.

End notes: I don't get constipated (incomplete evacuation) much due to the vinegar. Emotional distress (from politics for me) really sent my IBS-C into overdrive and triggered my need for a very limited diet. For brief times I was on a small dose of an anti-anxiety med that had a side effect of helping IBS-C. Then I stopped, and for some reason, some months later, I was depressive and then again on a small dose of an anti-depressant and then stopped. I have used relaxation apps and the IBS-C, doctor recommended Mahana app (the free, initial series of information) and still do its square breathing. I do stomach massage as laid out by the National Health Service of England.

IBS-C is functional. I think a redundant colon contributes to its manifestation. I can elaborate on the above if you want, in any way.

Keep trying until you find what works for you. A GI/IBS dietitian may help or the GI psych route I am now taking.

Jump to this post

you sound like me!
Thank you for the vinegar tip. xoxo

REPLY
1 reply
lesliejones | @lesliejones | Mar 18 5:19pm

I have a torturous colon. I have a colonography instead of a colonoscopy. You still have to prep for it, but you are awake and photography is taken inside of you.

REPLY
researchmaven | @researchmaven | Mar 18 9:14pm
In reply to @longcolin "you sound like me! Thank you for the vinegar tip. xoxo" + (show)
@longcolin

you sound like me!
Thank you for the vinegar tip. xoxo

Jump to this post

Longcolin,

I do a lot of things differently now -- I had Cognitive Behavioral Therapy for anxiety and I can control it now at a school grade of B -- necessary as there is no firewall between my head and my gut. I eat bland food (vineger is out- when my gut was better it was in). I always have some fiber with a meal. I take methylfolate and B12 together as it seems to help my gut and energy levels. Slipperly elm inner bark powder with almost every snack/meal to provide slip to stool. Kiwi/rubarb compote at night as it has a stimulant effect, hopefully natural. Magnesium at night with 1 Colace brand stool softener. I sip more water; every MD says it matters and it does. I take Intolerans dietary enzymes with every snack/meal. I still have a limited diet but am doing better with small amounts of fish and meat. My gut needs a lot of support. I hope your gut is better, even if I sound like you. Note I am grateful to have come out in a decent way on this journey. And I am sure, in my case, I wrecked my gut when I was a sugarholic. I counsel everyone to eat better than I did. All my best!

REPLY
catmat | @catmat | May 24 8:37pm

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.

REPLY
1 reply
juliannm79 | @juliannm79 | May 25 8:20am
In reply to @catmat "Hello! I just spent yet another whole day at the Emergency Room due to constipation. I..." + (show)
@catmat

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.

Jump to this post

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! 🙂

REPLY
sensationalsmilesinc | @sensationalsmilesinc | May 25 1:08pm

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...

REPLY
1 reply
carolynj15 | @carolynj15 | Jun 6 8:18am

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.

REPLY
2 replies
sensationalsmilesinc | @sensationalsmilesinc | Jun 7 2:45pm
In reply to @carolynj15 "I also was told I have a moderately tortuous colon at my last colonoscopy. Was not..." + (show)
@carolynj15

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.

Jump to this post

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...

REPLY
standinginfaith | @standinginfaith | Jun 8 10:02am
In reply to @carolynj15 "I also was told I have a moderately tortuous colon at my last colonoscopy. Was not..." + (show)
@carolynj15

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.

Jump to this post

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!!

REPLY
beenthere25 | @beenthere25 | Jun 9 9:27am

I was diagnosed with colon angulation post back surgery. The IM doc thought it was because of adhesions/scar tissue attached to my colon and when they straightened the spine, the angulation happened. So far, my IM doc has me taking MiraLax 2x daily. It seemed to help for awhile but now I’m back to feeling bloated, unable to pass gas, nauseated and burping constantly. Has anyone had laparoscopic surgery to clean up adhesion on an angulated colon? Also I am without a gallbladder ☹️

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