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.

@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
@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

Jump to this post

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.

REPLY
@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

Jump to this post

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

REPLY
@kalbin

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

Jump to this post

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

REPLY

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?

REPLY
@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?

Jump to this post

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

REPLY
@pdag41

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.

Jump to this post

I am 70 years old. I've dealt with a tortuous intestine and constipation my entire life. Doctors did not help me. The routines they all suggested did not help me. I am fit and exercise 6 days a week. I'm active and not sedentary. It was another patient on this site that helped me. Of course we should all watch our intake of water and make sure we are drinking enough, getting enough sleep, take good care of ourselves. And I realize that there are more issues that could be going on that do need medical attention. But in my years of living I've found the doctors are quick to order tests and procedures and stick to a protocol. It's all the same. Miralax, included. Which was awful for me but I religiously followed every instruction I was given because I wanted to feel better and become "normal". It was awful living like that. I understand. I am using Prunelax now. It has been wonderful. It has changed my life and the gastro doctor has given me a "go ahead" on the continuous use. It can change the color of your intestine but there is apparently no harm. It's due to the senna. I have taken both mini tabs and the Prunelax Max Strength. I take either 4 mini's or 2 1/2 Max tabs. This works for me. I hope that you find something also. It's sad and frustrating and expensive to deal with the doctors. It IS A BIG DEAL that those of us are living with this uncomfortable agony on a daily basis. We need to treated as individuals and what is best for each person. Just handing me a sheet with my next scheduled appointment, procedure, and directions for taking Miralax or whatever, over and over and over, does NOT work. Our doctors need to branch out and look beyond the "protocol". I wish you all the best. Don't give up hope. And I SO understand what you are going through. I could cry, I understand so well. Best wishes. Jacque

REPLY
@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?

Jump to this post

Hi @notmoff 😊
Yes, drinking too much water can definitely "wash out" the minerals in your body. I ended up in the hospital for two days as they slowly added saline IV drips. (They have to do it super slowly so your brain doesn't swell.) Most doctors will say 6 to 8 drinks during the day of 8 ounces of water is a good target. You can turn one or two of them into your Miralax drink if you want. You must have added your two 8 ounces of Miralax in addition to your normal drinking and then added a few more drinks of water to wash it down so it ended up being too much? I am on a daily Senokot S. I know it has a stimulant, but without it, I cannot go. Did your gastro doc say it's okay to take Senokot S every day?

REPLY
@sallyw133

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!

Jump to this post

Hi @sallyw133 😊 Thank you for the excellent heads up regarding the Barium x-ray. I have a significant tortuous colon so that bit of information is extremely helpful! Not to change the subject, but you mentioned that you found an outstanding neurologist for your migraines. May I ask what she says is causing the migraines and the recommended treatment? My favorite aunt suffers with migraines and I would love to have some information for her. Thank you again!

REPLY
@hello1234

Hi @sallyw133 😊 Thank you for the excellent heads up regarding the Barium x-ray. I have a significant tortuous colon so that bit of information is extremely helpful! Not to change the subject, but you mentioned that you found an outstanding neurologist for your migraines. May I ask what she says is causing the migraines and the recommended treatment? My favorite aunt suffers with migraines and I would love to have some information for her. Thank you again!

Jump to this post

I’ve had them for nearly 30 years. They thought at the time that years of chronic sinus infections, then three consecutive sinus surgeries, caused the nerves to become “irritated” for lack of a better word and then not know how to turn off. I’ve been everywhere, been on every drug, had every procedure. It’s been a lifelong battle, all while raising two kids and having a demanding career. They thought stress a trigger, so I left my job 11 yes ago. No help. Right now I take Nurtec every other day. I have a number of drugs to use as abortives. Nurtec is best I’ve found for me. It’s an every day struggle along with the gi issues which of course they say is a gut-brain thing because I also have slow-motility. Don’t know if any of this helps. Best advice. Headache specialist. All neurologists are not headache specialists.

REPLY
Please sign in or register to post a reply.