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

Interested in more discussions like this? Go to the Digestive Health Support Group.

sallyw133 | @sallyw133 | Jul 16, 2022

Are you kidding!’Severe abdominal pain sent me to the ER. The dr there called my
Gi, 4 hrs away. The two decided I needed a colonoscopy. So the next afternoon a local surgeon performed it. No gi locally. Didn’t show anything other than tortuous colon. So my gi decides, one month later, he wants to do it himself as the other dr wasn’t a gi. Off I
Travel to Cleveland, do the prep in a hotel room, only to find out the prep wasn’t complete enough for him to do most of what he planned to do. And he didn't even come back to talk to me. I was furious!

REPLY
1 reply
nlb28 | @nlb28 | Jul 16, 2022
In reply to @sickofbeinsick1 "That sounds awful….are they gonna remove some herniated section?" + (show)
@sickofbeinsick1

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

Jump to this post

I see them on the 21st. If it can help me I would do it

REPLY
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 16, 2022

I wish you well…I’ve been snake bitten…I’ve had so many scopes, last in 2020. I’ve found another I’ve yet to see, but the 1st thing on the list is duh, another colonoscopy…I don’t know what to do!
😩

REPLY
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 16, 2022
In reply to @sallyw133 "Are you kidding!’Severe abdominal pain sent me to the ER. The dr there called my Gi,..." + (show)
@sallyw133

Are you kidding!’Severe abdominal pain sent me to the ER. The dr there called my
Gi, 4 hrs away. The two decided I needed a colonoscopy. So the next afternoon a local surgeon performed it. No gi locally. Didn’t show anything other than tortuous colon. So my gi decides, one month later, he wants to do it himself as the other dr wasn’t a gi. Off I
Travel to Cleveland, do the prep in a hotel room, only to find out the prep wasn’t complete enough for him to do most of what he planned to do. And he didn't even come back to talk to me. I was furious!

Jump to this post

OMG!! Sounds like you and I have the same kind of luck.
I would be furious as well !
That’s exactly why I’m leery of having another colonoscopy …but that doctor did you bad

REPLY
1 reply
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 16, 2022
In reply to @notmoff "I increased my use of water, fiber, and most importantly, supplemental senna, Miralax and stool softeners..." + (show)
@notmoff

I increased my use of water, fiber, and most importantly, supplemental senna, Miralax and stool softeners to prevent obstipation following a compression fracture.

I have now been diagnosed with hyponatremia and urged to immediately go to the ER for a saline iv. My complying resulted in sitting in the crowded ER for 6 hours last night, told they had no empty room necessary to insert the iv and just to quietly wait for an empty room, without drinking any water or risk death. I returned home, didn't die but discovered that I had likely induced this condition by taking too many laxatives and water.
Sounds unlikely but true. Subsequent calls = same answer - return to ER and wait.

Jump to this post

I’ve done the same…go to ER.
If you’re not bleeding or having a heart atttack, you go to the back of the line. I’ve left the ER before as well

REPLY
sallyw133 | @sallyw133 | Jul 16, 2022
In reply to @sickofbeinsick1 "OMG!! Sounds like you and I have the same kind of luck. I would be furious..." + (show)
@sickofbeinsick1

OMG!! Sounds like you and I have the same kind of luck.
I would be furious as well !
That’s exactly why I’m leery of having another colonoscopy …but that doctor did you bad

Jump to this post

I’m sick of all of them!

REPLY
kalbin | @kalbin | Jul 20, 2022

I just wanted to share/vent here with you guys. I had an appointment this morning with one of the g.i. docs, and of course after 2 unsuccessful Colonoscopies their only answer is to do another one with a double balloon something or other at a hospital. Even a barium enema with 3 bags of barium didn't work. I also of course have a terrible time getting cleaned out enough. He also kind of implied that my successful weight loss could indicate cancer and that happened to his brother. I told him that my weight loss has been gradual, healthy and intentional and I don't ever remember telling anyone that losing 86 lbs over the last 14 months has been EASY. It still seemed to keep getting implied that the weight loss is due to something being wrong with me.

I've had blood tests twice in the past 6 months, a mammogram and a wellness check. Absolutely nothing wrong with me still but blood in my stool but it's been going on for a long time. Not anemic or anything. With otc laxative every day I've even gotten my life long constipation under control. This is all so weird. Any experience with something like this please let me know. Thanks!!!
So I reluctantly had to schedule this most likely useless colonoscopy for September. What if that doesn't work either?

REPLY
2 replies
lskoehl62 | @lskoehl62 | Jul 21, 2022
In reply to @kalbin "I just wanted to share/vent here with you guys. I had an appointment this morning with..." + (show)
@kalbin

I just wanted to share/vent here with you guys. I had an appointment this morning with one of the g.i. docs, and of course after 2 unsuccessful Colonoscopies their only answer is to do another one with a double balloon something or other at a hospital. Even a barium enema with 3 bags of barium didn't work. I also of course have a terrible time getting cleaned out enough. He also kind of implied that my successful weight loss could indicate cancer and that happened to his brother. I told him that my weight loss has been gradual, healthy and intentional and I don't ever remember telling anyone that losing 86 lbs over the last 14 months has been EASY. It still seemed to keep getting implied that the weight loss is due to something being wrong with me.

I've had blood tests twice in the past 6 months, a mammogram and a wellness check. Absolutely nothing wrong with me still but blood in my stool but it's been going on for a long time. Not anemic or anything. With otc laxative every day I've even gotten my life long constipation under control. This is all so weird. Any experience with something like this please let me know. Thanks!!!
So I reluctantly had to schedule this most likely useless colonoscopy for September. What if that doesn't work either?

Jump to this post

I had a colonoscopy in May and the gastroenterologist told me he couldn’t finish because he said I had a lot of looping. He said that they would preform another in the hospital next month. June had the second one and same results. He put me on Linzess back in May the highest dose this doesn’t work. I too had to prep for 2 days. The only thing that works to get my bowels moving is Miralax twice a day and then taking 2 laxatives on Tuesday to go on Wednesday. People that doesn’t have this problem have no idea how much we have to do just to go. Scheduling a poo day I have just learned my cousin has to do the same thing

REPLY
1 reply
kalbin | @kalbin | Jul 21, 2022
In reply to @lskoehl62 "I had a colonoscopy in May and the gastroenterologist told me he couldn’t finish because he..." + (show)
@lskoehl62

I had a colonoscopy in May and the gastroenterologist told me he couldn’t finish because he said I had a lot of looping. He said that they would preform another in the hospital next month. June had the second one and same results. He put me on Linzess back in May the highest dose this doesn’t work. I too had to prep for 2 days. The only thing that works to get my bowels moving is Miralax twice a day and then taking 2 laxatives on Tuesday to go on Wednesday. People that doesn’t have this problem have no idea how much we have to do just to go. Scheduling a poo day I have just learned my cousin has to do the same thing

Jump to this post

I also use Miralax once or twice a day and one small dose of magnesium chloride. The blood in my stool is still a mystery but I think I have finally gotten the constipation under control. I have tons of gas though so I have to also take 2-4 antacid tablets a day. Best wishes and thank you for posting!

REPLY
1 reply
sallyw133 | @sallyw133 | Jul 21, 2022

My gi told me a barium X-ray with a tortuous colon is not a good idea because the barium can be so difficult to pass out of all those bends, kinks and loops and will harden if not passed after a certain period of time. You might want to consider looking for someone new. This is a lifelong issue and you need someone you can trust and will listen to you. Believe me, I’ve been through this with a number of chronic health issues and it’s a major pain. It took me five tries to find the right neurologist for my migraines. I finally learned to ask for a doctor that was compassionate and took a personal interest in their patients. I got a great doctor! I can message her at any time and generally hear back the same day. Still searching for that gi dr. Have an apt in
Sept. Hopeful maybe he’ll be the one!

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.