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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notmoff | @notmoff | Jul 1, 2022
In reply to @sallyw133 "I am totally not discouraging you from trying the low FODMAP diet, only sharing MY experience..." + (show)
@sallyw133

I am totally not discouraging you from trying the low FODMAP diet, only sharing MY experience with it. I was so sick and in so much pain last summer that I tried it as a last resort. I did it under the guidance of a trained dietitian. I was already severely underweight and continued to lose more weight because the diet is so limiting. I felt so sick and the foods I was allowed to eat, I did not want to eat, so I just barely ate. My gi
finely made me stop it.
I recently met with a new dietician after finding out the tortuous colon is the root cause of my constipation. She said the FODMAP works for food sensitivities which is generally not the case with tortuous colon. It is an actual functional issue. It’s more the composition of food that affects our digestion, unless you have an actual intolerance like wheat or lactose. I’ve been following her diet for a week and have noticed a huge improvement after years of every medication available.

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To Sallyw133 - My thinking is a little confused since I reactivated an old back injury that according to my internist added to my chronic obstipation. I'm in pain barely controlled by acetaminophen and using a lot of otc senna products and stool softeners to keep my bms going which also reduces my back pain and spasms. So my apologies if my questions are basic.
Are you saying that if a tortuous colon is the main cause of constipation, but there are no food allergies or sensitivities, a low fodmop diet is inappropriate? And if so, that a low fiber diet reduces constipation more than high fiber?
I've been told I have a very floppy colon and I believe there is a lot of scar tissue causing adhesions in my gut. Maybe I'm making my problems worse with my high fiber food choices that would explain the sharp, but mostly brief, pains I get as the fiber struggles to make it through all those tight places.
Your thoughts?

REPLY
1 reply
lorrievw | @lorrievw | Jul 1, 2022
In reply to @watenpws "would like to hear how others are managing ? I'm doing fair-keep fluids up -high fiber-25-30..." + (show)
@watenpws

would like to hear how others are managing ? I'm doing fair-keep fluids up -high fiber-25-30 grams daily...psylium in am along with bentyl for spasms and peppermint oil capsule..drink a lot of fluid, small amt of 1/2 strength coffee 🙁 herbal ice teas, red meat 1-2 times month, Large serving of oatmeal and fruit in am-decreased fats- when I have a bowel movement-the spasms build up until I either pass gas or move a stool. My focus is to keep "everything flowing"-several times I went off regimen-got constipated with increased spasms-taught me a GOOD LESSON AND I REALIZE THAT BEHAVIOR IS WHAT WILL SEND ME INTO COMPLICATIONS. Need to be dilegent-if I miss my psyllium fiber and oatmeal in am (go out with friends)...I come back home, tank up on fluids, my psyllium and then have the oatmeal for lunch or dinner. I eat fruit 3 x day -with meals or snacks -dessert and I am tolerating 2 walnuts with my oatmeal . Really making an effort to chew well and slow down...
Anyone have more advice? I'm not getting much help from my GI doctor or staff-no teaching given...(got everything off the internet (which isn't always accurate .)
Would like to know-
Is this a lifelong condition?
Would surgical removal of elongated portion return me to my
prior status?
My last colonoscopy was extremely painful...no cancer they say,
no polyps, but if they werent able to "get through", how do they
know that?
Would like to know your experience with management...I feel
obsessed with my bowels-living on the toilet.

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I’ve had bowel issues pretty much my whole life….I’m 52. As a child had severe constipation and now suffer from loose stools and bouts of diarrhea. Discovered I had a tortuous colon four years ago from a colonoscopy. Never really gave it much thought because the GI dr just put a one sentence statement in my report that I had this condition and my family Dr. didn’t make a big deal about it. They never equated my issues with having an extra long loopy bowel. 😣Fast forward to this week when I went in to have another colonoscopy by a different GI and he wasn’t able to complete the scope and just made a comment that there was an angulation in my bowel. I went home from the hospital wondering why he couldn’t complete the scope and OMG I had an aha moment today when I remembered four yrs ago my Dr telling me I had this. I began researching this TC and came across this group and also a FB post from the Mayo Clinic with about 50 or more replies from people with this condition. WOW! Mind blowing that I finally have an answer to all of my ongoing gut issues some 40 years in. In the past I’ve followed the SCD diet that is mainly followed by Chrohns and Colitis sufferers. It did work great for me but went off of it because of how strict it is. I think I’ll start it again.

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sallyw133 | @sallyw133 | Jul 2, 2022
In reply to @notmoff "To Sallyw133 - My thinking is a little confused since I reactivated an old back injury..." + (show)
@notmoff

To Sallyw133 - My thinking is a little confused since I reactivated an old back injury that according to my internist added to my chronic obstipation. I'm in pain barely controlled by acetaminophen and using a lot of otc senna products and stool softeners to keep my bms going which also reduces my back pain and spasms. So my apologies if my questions are basic.
Are you saying that if a tortuous colon is the main cause of constipation, but there are no food allergies or sensitivities, a low fodmop diet is inappropriate? And if so, that a low fiber diet reduces constipation more than high fiber?
I've been told I have a very floppy colon and I believe there is a lot of scar tissue causing adhesions in my gut. Maybe I'm making my problems worse with my high fiber food choices that would explain the sharp, but mostly brief, pains I get as the fiber struggles to make it through all those tight places.
Your thoughts?

Jump to this post

That is what the dietitian told me. There are two types of constipation. One from poor eating habits, food sensitivities, sedentary habits, etc. The other, functional. Slow motility, tortuous colon, etc. Too much fiber, especially insoluble, will make the second type worse. It’s hard to digest and basically tends to move slowly and is more likely to “get stuck” in all those loops and twists. All I know is that I am on day 10 and am pretty much taking almost nothing and going every day. It is difficult. I really miss fruit. But she did say after two weeks, I could try small amounts here and there. I am not a dr so please realize that this has been what is working for ME.

REPLY
2 replies
notmoff | @notmoff | Jul 3, 2022
In reply to @sallyw133 "That is what the dietitian told me. There are two types of constipation. One from poor..." + (show)
@sallyw133

That is what the dietitian told me. There are two types of constipation. One from poor eating habits, food sensitivities, sedentary habits, etc. The other, functional. Slow motility, tortuous colon, etc. Too much fiber, especially insoluble, will make the second type worse. It’s hard to digest and basically tends to move slowly and is more likely to “get stuck” in all those loops and twists. All I know is that I am on day 10 and am pretty much taking almost nothing and going every day. It is difficult. I really miss fruit. But she did say after two weeks, I could try small amounts here and there. I am not a dr so please realize that this has been what is working for ME.

Jump to this post

Thank you. It is great to hear you're having a daily bm and are more comfortable. I hope you post your progress.

I have emailed my Kaiser internist about this as so much on the web recommends a high fiber diet that "pushes" through the tortuous loops rather than struggles to negotiate the turns and twists. I have a kitchen full of high fiber produce & legumes, but they might be peeled, blended or cooked to reduce the fiber content.

Kaiser wrote: "But a low-fiber diet is often needed after bowel surgery or when you have a flare-up of a bowel problem. You might be asked to follow this diet if you have Crohn's disease, ulcerative colitis, diverticulitis, or another condition that can cause swelling, pain, or NARROWING OF YOUR BOWELS." https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.following-a-low-fiber-diet.abo1009

REPLY
1 reply
sallyw133 | @sallyw133 | Jul 3, 2022
In reply to @notmoff "Thank you. It is great to hear you're having a daily bm and are more comfortable...." + (show)
@notmoff

Thank you. It is great to hear you're having a daily bm and are more comfortable. I hope you post your progress.

I have emailed my Kaiser internist about this as so much on the web recommends a high fiber diet that "pushes" through the tortuous loops rather than struggles to negotiate the turns and twists. I have a kitchen full of high fiber produce & legumes, but they might be peeled, blended or cooked to reduce the fiber content.

Kaiser wrote: "But a low-fiber diet is often needed after bowel surgery or when you have a flare-up of a bowel problem. You might be asked to follow this diet if you have Crohn's disease, ulcerative colitis, diverticulitis, or another condition that can cause swelling, pain, or NARROWING OF YOUR BOWELS." https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.following-a-low-fiber-diet.abo1009

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Interesting. My diet isn’t exactly the same and one big difference is the fact that I have a LOT of stool. So much, in fact, that I’ve stopped all meds, prescriptions and over-the-counter.

REPLY
1 reply
kayburnett | @kayburnett | Jul 4, 2022
In reply to @sallyw133 "That is what the dietitian told me. There are two types of constipation. One from poor..." + (show)
@sallyw133

That is what the dietitian told me. There are two types of constipation. One from poor eating habits, food sensitivities, sedentary habits, etc. The other, functional. Slow motility, tortuous colon, etc. Too much fiber, especially insoluble, will make the second type worse. It’s hard to digest and basically tends to move slowly and is more likely to “get stuck” in all those loops and twists. All I know is that I am on day 10 and am pretty much taking almost nothing and going every day. It is difficult. I really miss fruit. But she did say after two weeks, I could try small amounts here and there. I am not a dr so please realize that this has been what is working for ME.

Jump to this post

What’s interesting and confusing is that the SCD (Specific Carbohydrate Diet) and the Kaiser low fiber diet are contradictory. SCD calls for fruits, nuts, cheese and yogurt while eliminating sugars & grains while the Kaiser diet calls for canned veg & fruit, fruit juices (which are sugary), no nuts or raw veg. They are consistent on protein, pretty much. I get the low fiber to push through twisted colon idea but what foods to eat is still confusing to me. I try to stick to bland, easy to digest foods and I’ve rediscovered prunes for the underlying constipation. Traveling and socializing with this diet is very challenging. And those who mention checking with your doctor…I align with those who say doctors don’t deal with this. I’m looking for a Chicago based Doctor of Osteopathy (DO) who may take a broader view of health.

REPLY
kayla1988 | @kayla1988 | Jul 5, 2022
In reply to @sallyw133 "Interesting. My diet isn’t exactly the same and one big difference is the fact that I..." + (show)
@sallyw133

Interesting. My diet isn’t exactly the same and one big difference is the fact that I have a LOT of stool. So much, in fact, that I’ve stopped all meds, prescriptions and over-the-counter.

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Hi Sally, I know this is alot to ask, but would you mind sharing with me what you typically eat in a day now on the low fiber. I feel like your story sounds just like mine. The doctor told me to follow a very high fiber diet for my tortuous colon along with magnesium, miralax and motegrity and I still couldn't go to the bathroom. It wasn't until I saw your post that everything clicked. Thank you for sharing, you are helping so many people 🙏

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1 reply
sallyw133 | @sallyw133 | Jul 6, 2022
In reply to @kayla1988 "Hi Sally, I know this is alot to ask, but would you mind sharing with me..." + (show)
@kayla1988

Hi Sally, I know this is alot to ask, but would you mind sharing with me what you typically eat in a day now on the low fiber. I feel like your story sounds just like mine. The doctor told me to follow a very high fiber diet for my tortuous colon along with magnesium, miralax and motegrity and I still couldn't go to the bathroom. It wasn't until I saw your post that everything clicked. Thank you for sharing, you are helping so many people 🙏

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Sure. For breakfast, I usually have a small bowl of
Cracklin’ Bran cereal (my current fav! Ok as it’s oat bran), cup of coffee and white grape juice. Lunch smoothie with fruit, milk, yogurt, protein powder. Crackers and cream cheese dip. Dinner usually chicken or seafood grilled. Potatoes. Grilled veggies. Or pasta with grilled veggies or marinara sauce. Pizza with cheese. Snacks ok but no popcorn. Ground chicken or turkey ok. Having nachos tonight. Just no tomato or lettuce. I know it sounds restrictive but not near as bad as FODMAP. And she did say after a few weeks I could start adding in a few of something here and there. Wouldn’t destroy me for days. But please remember, this is working for ME. I don’t want anyone to get messed up because of it. I was desperate and willing to try anything. I also had awful diarrhea initially because I was doing it with the meds. It takes some experimenting. Feel free to send me messages with any questions. Hope it helps anyone!

REPLY
1 reply
kayla1988 | @kayla1988 | Jul 6, 2022
In reply to @sallyw133 "Sure. For breakfast, I usually have a small bowl of Cracklin’ Bran cereal (my current fav!..." + (show)
@sallyw133

Sure. For breakfast, I usually have a small bowl of
Cracklin’ Bran cereal (my current fav! Ok as it’s oat bran), cup of coffee and white grape juice. Lunch smoothie with fruit, milk, yogurt, protein powder. Crackers and cream cheese dip. Dinner usually chicken or seafood grilled. Potatoes. Grilled veggies. Or pasta with grilled veggies or marinara sauce. Pizza with cheese. Snacks ok but no popcorn. Ground chicken or turkey ok. Having nachos tonight. Just no tomato or lettuce. I know it sounds restrictive but not near as bad as FODMAP. And she did say after a few weeks I could start adding in a few of something here and there. Wouldn’t destroy me for days. But please remember, this is working for ME. I don’t want anyone to get messed up because of it. I was desperate and willing to try anything. I also had awful diarrhea initially because I was doing it with the meds. It takes some experimenting. Feel free to send me messages with any questions. Hope it helps anyone!

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Thank you so much for responding and sharing with us 😊 Keep us updated on your progress, what is helping you and what isn't. I'm going to try this 💛

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 7, 2022
In reply to @bgiddio "@sickofbeinsick1 Hi Tina. Know how you feel. Diagnosed with tortuous colon, insufficient pancreas, etc. But the..." + (show)
@bgiddio

@sickofbeinsick1 Hi Tina. Know how you feel. Diagnosed with tortuous colon, insufficient pancreas, etc. But the most exasperating thing is the IBS. So everyday is different, never
knowing what the day will bring, constipation, diarrhea, etc. Must wear pads every day just
brings on a whole level of emotional trauma.
I went to a certified nutritionist, and that's the only thing that has helped. I scheduled 6 visits, and I am at my last meeting on line. Her protocol has helped, smoothies, soft foods. When I
deviate from it, its trouble. Went to a friend's house and ate things I should have run from,
sooooooo, looks like I have to be very strict about what I eat and what I don't eat.
Dr's are taught meds, surgery. I highly recommend a good Certified Nutritionist. My primary Dr. actually recommended food allergy testing and the Fod Map diet. I think its all about the food we eat.
Good Luck!

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I’ve been through ALL that. That’s why I took it upon myself to figure what I can & can’t eat. Everybody’s different, I can’t eat meat…(except fish & ground meat) I am a MEAT lover, it sucks…but, you get used to it. Not a big fan of fish…but once in a while I have it. Sometimes I don’t have to “eat” anything…if I wear something that’s snug AT ALL around my waist / mid-section, there will be hell to pay. Definitely not worth it.
What I really don’t understand, is how this happened. I always ate what EVER, but I never left home w/out Imodium. Always had diarrhea. Then everything changed…quite frustrating, especially for my family…since I can’t eat, I don’t cook (much)
C’est la vei ?

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