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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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @sallyw133 "Had a virtual visit with a nutritionist/dietitian from my GI’s dept. She had more helpful advice..." + (show)
@sallyw133

Had a virtual visit with a nutritionist/dietitian from my GI’s dept. She had more helpful advice for constipation than all drs I’ve seen combined! Actually took time to review my records. Asked me to go over what I
Eat and do in a typical day. Found out most things I was eating were making things worse! No raw fruits and veggies, especially salads and corn. No popcorn. No red meat. Fruit ok in smoothies as it’s blended. Watch high fiber food. All things easy to digest and move quickly through digestive track. No fiber supplements. Going to be hard, especially this time of year, but I’m willing to try anything!!!! I’ve been pushing all this stuff thinking it would help! I know some of you have brought up many of these before. Why haven’t my
Doctors? Makes me so mad!!! Just take another $1000 drug.

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I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain & bloat just starts…I can’t believe there are SO MANY diagnosed with ….tortuous, colon…! Would li,e sallw133 & tropicbev & anyone one else with this diagnosis to get together (virtually) of course, & see if we can find something we may have in common that could cause this…painful aggravating pain in the gut ….cuz I have no idea…if you know what I mean?

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4 replies
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @sickofbeinsick1 "I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain &..." + (show)
@sickofbeinsick1

I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain & bloat just starts…I can’t believe there are SO MANY diagnosed with ….tortuous, colon…! Would li,e sallw133 & tropicbev & anyone one else with this diagnosis to get together (virtually) of course, & see if we can find something we may have in common that could cause this…painful aggravating pain in the gut ….cuz I have no idea…if you know what I mean?

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I’m gonna sit by my phone ALL day today & see what happens

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @sickofbeinsick1 "I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain &..." + (show)
@sickofbeinsick1

I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain & bloat just starts…I can’t believe there are SO MANY diagnosed with ….tortuous, colon…! Would li,e sallw133 & tropicbev & anyone one else with this diagnosis to get together (virtually) of course, & see if we can find something we may have in common that could cause this…painful aggravating pain in the gut ….cuz I have no idea…if you know what I mean?

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I had a hip implant that I thought was causing mine.

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tropicbev | @tropicbev | Jul 15, 2022
In reply to @sickofbeinsick1 "I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain &..." + (show)
@sickofbeinsick1

I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain & bloat just starts…I can’t believe there are SO MANY diagnosed with ….tortuous, colon…! Would li,e sallw133 & tropicbev & anyone one else with this diagnosis to get together (virtually) of course, & see if we can find something we may have in common that could cause this…painful aggravating pain in the gut ….cuz I have no idea…if you know what I mean?

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I believe I was born with a long and winding colon. My father suffered from this, as did his brother. Which is interesting because I'm told it is more common in women. My dad had to have surgery for a strangulation and so did I. My uncle had the same thing and had to have a resection as well.

I also believe that multiple abdominal surgeries contributed to my problem. First, the surgery to correct the strangulated colon, then a hysterectomy, then a bladder lift. All these invasive surgeries created adhesions! I'm sure that wreaks havoc on my redundant colon. The symptoms got worse after my most recent surgery which was the bladder lift. I hope I never have to have another abdominal surgery every.

I went to a colorectal surgeon who said surgery for redundancy is only done as a LAST RESORT, if nothing is passing through even with medication. So I will live with this for the rest of my life I'm sure. Thank goodness for this platform so that we know we are not alone.

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022

Well I know I didn’t inherit mine…my family (all girls now) have NO issues. But I agree with you on so many procedures….I’m starting to think all the scopes & everything else, may be exacerbating the issue…I found a “new” GI & of course, that’s the 1st thing she wants to do….even ‘tho my last was only 2 yrs ago🙄

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sallyw133 | @sallyw133 | Jul 15, 2022
In reply to @sickofbeinsick1 "I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain &..." + (show)
@sickofbeinsick1

I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain & bloat just starts…I can’t believe there are SO MANY diagnosed with ….tortuous, colon…! Would li,e sallw133 & tropicbev & anyone one else with this diagnosis to get together (virtually) of course, & see if we can find something we may have in common that could cause this…painful aggravating pain in the gut ….cuz I have no idea…if you know what I mean?

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I’m in if someone can set it up.

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @notmoff "To: sickofbeinsick1 AKA Tina Thanks for the details although you may tire of reciting them as..." + (show)
@notmoff

To: sickofbeinsick1 AKA Tina
Thanks for the details although you may tire of reciting them as I am of repeating all my symptoms and "issues". I have a few more issues than you have, but I will spare you. I haven't had a hip implant, however. My issue is serious weight and muscle mass loss, not gain.
A few of your ideas give me hope and if you have time, I'd like to hear more . . .
1. Maternity underwear? Like you, with any pressure anywhere on my trunk, the usual pain increases quickly so I limit my time in public where I try to look presentable. Can you suggest any online sources of big, stretchy maternity underpants that don't fall off? How do yours stay up? Stretchy throughout? Although I am 5'4" (was 5' 9" before compression fractures) and 103 lbs, my bloated tummy is VERY large.

2. Protein shakes/powders? - I'm new to protein shakes but bought some soy milk powder to mix with water, peanut butter, maybe a frozen banana and some dates but I think there are higher protein ingredients. Any suggestions?

It sounds like you have made a LOT of progress. Normal underwear and nice clothes may well be in your future!

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I had to laugh about underwear…sometimes mine get stretched or my bloat goes down & I DO have a problem keeping them on sometimes (I’m laughing with, not at you) it’s horrible! I just get cotton undies at Walmart, I had to check….they’re not maternity just 2X but there’s no binding elastic.
As far as food…I’ve found there’s a lot more soft than I thought…
guacamole, just about any cooked. veggies, I do the protein shakes, I tried the powder…to compare cuz the drinks are $$
THE biggest thing that I’ve done, besides soft food is waiting. With a long colon, it takes a lot longer for food to go ALL the way through, so..waiting & eating small portions 👍.
You say bananas? That could bind you up & take even longer, same with PB, even bread for that matter. V-8, prune juice, water…
also energy drinks…(sugar free)I can have a small burger w/ half the bun. I’ll try to think of other stuff.
And thank you for your input
😊

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nlb28 | @nlb28 | Jul 15, 2022

I don't want to live with this diverticula that keeps me going from bowel block to diarrhea.
Just found out I have a hernia in my stomach. 4 ft of narrowed bowel

I'm hoping for this one last try

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1 reply
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @sallyw133 "Just my totally non-medical advice. Working with a dietician who has advised fiber is actually counterproductive..." + (show)
@sallyw133

Just my totally non-medical advice. Working with a dietician who has advised fiber is actually counterproductive for tortuous colon. I’ve been following a low-fiber diet and though, not perfect by any means, have felt better the past month and mostly better BM’s. Have had to add in some mag oxide and Miralax occasionally to move things along and must drink a lot of water. I’ve also been under a huge amount of stress last too weeks with two new diagnoses to deal with.

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Magnesium citrate has worked WELL for me in the past….I was in dire straits….not sure I’d advise anyone who isn’t completely blocked to drink that…not sure what the diff is between citrate & oxide

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @nlb28 "I don't want to live with this diverticula that keeps me going from bowel block to..." + (show)
@nlb28

I don't want to live with this diverticula that keeps me going from bowel block to diarrhea.
Just found out I have a hernia in my stomach. 4 ft of narrowed bowel

I'm hoping for this one last try

Jump to this post

That sounds awful….are they gonna remove some herniated section?

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