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

To those who rely on Miralax several times per day to get things moving . . . My internist said that perhaps it was my 2/day Miralax usage that dropped my sodium level to 123 mEq/L, below the 135 mEq/L minimum. She said that with this level of "hyponatremia", I should be barely functional but I had no apparent symptoms. Also she said I needed a saline iv - never provided after I increased the sodium level by not drinking water or using Miralax (that the gastroenterologist had suggested I use freely as needed. ) She recommended Senna-S.
Has anyone ended up with serious hyponatremia as a result of our trial and error efforts to simply have a normal bm? Do doctors order blood tests to keep track of the electrolytes? Should I use pedialyte?

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My doctor had me using 4- 8oz glasses of Miralax every day for 2 months before going on Linzess, which didn’t work. I’m doing 2- 8oz glass of Miralax twice a day and scheduling my bowel movement day on Wednesday. My sodium level hasn’t dropped

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To those who rely on Miralax several times per day to get things moving . . . My internist said that perhaps it was my 2/day Miralax usage that dropped my sodium level to 123 mEq/L, below the 135 mEq/L minimum. She said that with this level of "hyponatremia", I should be barely functional but I had no apparent symptoms. Also she said I needed a saline iv - never provided after I increased the sodium level by not drinking water or using Miralax (that the gastroenterologist had suggested I use freely as needed. ) She recommended Senna-S.
Has anyone ended up with serious hyponatremia as a result of our trial and error efforts to simply have a normal bm? Do doctors order blood tests to keep track of the electrolytes? Should I use pedialyte?

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@kalbin

I had to look that up I'd never heard of it. How is he treating you right now for it all?

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He put me on a heartburn medication I don’t know why I don’t have GRED or heartburn. I go see him again next month

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@lskoehl62

I never noticed blood in my stool but I am anemic. 2nd colonoscopy my gastroenterologist did a upper endoscopy. He found severe portal hypertensive gastropathy thru out my stomach and my blood lose is coming from my stomach and I just don’t notice it in my stool. He also my large hiatal hernia which is about 2 1/2 inches which was also found in 2008 but it doesn’t cause me any problems. He didn’t like how my liver looked. I was diagnosed with a fatty liver in 2008 I go back and see him at the end of August

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I had to look that up I'd never heard of it. How is he treating you right now for it all?

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@nellie55

Hello Jane yes I do
I knoe your post is a few months ago but hope u receive this
I have had several colonoscopies and tend to easily become constipated ... I have had several
Episodes of being constipated with severe cramping to the point I faint several
Times during the episode ..fortunately my husband is an ER trauma physician and since these episodes have only occur at night he is home
I am recovering from last night episode and saw
The Restrictive diet fr fruits
And certain vegetables
I am
With you I don’t think mine is connected to diet
I eat fairly clean /
Green smoothies which usually helps me stay regular ... I
Think I get dehydrated and it sets up
Constipation.
The last episode was last year so I don’t faint on a regular basis and before that 6 years ago.
I would not want to have a
Partial colon removed .... I think the surgeon knows best... are u fainting too? The cramping is a ten painful and my BP drops etc I am screaming at times ...
What have you done since your post!
Did I get the surgery? Did U try the diet
I just joined this site

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I just joined this group and believe me when I say I have been so scared during the episodes I have trying to have a bowel movement. I had my first surgery in Oct of 2021. On going pain, 2 cat scans with no findings , blood work no issues. Had to get a second opinion, found an infection at the anastomosis from the first doctors cat scans that clearly he missed. Second surgery to remove the infected area which included an area of diverticulitis still...as well has my ovaries, tubes and appendix , can't believe my first doctor missed all of that....so frustrated.
Second surgery was 5-24-22, the pain when having a bowel movement reduces me to tears and multiple hot showers to help the throbbing. Have another flex sigmoid scheduled for next Wednesday and scared to death my Doctor won't wee anything. I am stuck at home most all the time because I am so scared to have an episode while out somewhere which would be awful. I am reading that this can last a year or more, I don't think I can handle that.

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@kalbin

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!

Jump to this post

I never noticed blood in my stool but I am anemic. 2nd colonoscopy my gastroenterologist did a upper endoscopy. He found severe portal hypertensive gastropathy thru out my stomach and my blood lose is coming from my stomach and I just don’t notice it in my stool. He also my large hiatal hernia which is about 2 1/2 inches which was also found in 2008 but it doesn’t cause me any problems. He didn’t like how my liver looked. I was diagnosed with a fatty liver in 2008 I go back and see him at the end of August

REPLY

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!

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@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
@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

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
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