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.

@virginia44

Kris, thanks for the info. I had a discussion on another thread about how going off of estrogen replacement effects the mucosa in the colon. I also researched it online, and there are a couple of solid studies on it. My problems started right about the time my doc took me off estrogen. I've had a tortuous colon since at least 2008, but problems just started 2 years ago...exactly when I went off estrogen. Going to ask the doc to let me go back on estrogen cream, at least.

Jump to this post

Really? Wow! As a matter of fact, mine started when I switched from brand to generic Lamotrigine. But how could that do it? Who knows.

REPLY
@kriszill

Ask your doctor about it. You’ll still have the urgency and the diarrhea, but the cramps are a lot less intense once the medicine takes effect. I use it “as needed,” which is at the first sign of a killer cramp coming on.

Jump to this post

Kris, thanks for the info. I had a discussion on another thread about how going off of estrogen replacement effects the mucosa in the colon. I also researched it online, and there are a couple of solid studies on it. My problems started right about the time my doc took me off estrogen. I've had a tortuous colon since at least 2008, but problems just started 2 years ago...exactly when I went off estrogen. Going to ask the doc to let me go back on estrogen cream, at least.

REPLY
@virginia44

Kriszill, I would like to hear more about that Levsin tablet. Sounds like something I may want to try. I've been in so many setting this past year where I have sudden attacks of cramps and urgency. It's SO discouraging and inconvenient.

Jump to this post

Ask your doctor about it. You’ll still have the urgency and the diarrhea, but the cramps are a lot less intense once the medicine takes effect. I use it “as needed,” which is at the first sign of a killer cramp coming on.

REPLY
@kriszill

Me too! And why can no one explain how a person can go along just fine with a redundant colon and then one day it starts causing all sorts of problems. I had an attack this morning when I was trying to get my wheelchair-bound daughter ready for the bus that takes her to her program. I immediately dissolved a Levsin tablet under my tongue to relax the spasms. I don’t know what I’d do without that medication! I’m sure I’d wind up with ischemic colitis every time.

Jump to this post

Kriszill, I would like to hear more about that Levsin tablet. Sounds like something I may want to try. I've been in so many setting this past year where I have sudden attacks of cramps and urgency. It's SO discouraging and inconvenient.

REPLY
@les2436

Hi, I have had cancer and I have Heart Failure, and redundant colon in 3 areas, by far the worst condition I have ever had. I'm pleading to any doctors out there that can help all of us. Quality of Life gone....HELP

Jump to this post

Me too! And why can no one explain how a person can go along just fine with a redundant colon and then one day it starts causing all sorts of problems. I had an attack this morning when I was trying to get my wheelchair-bound daughter ready for the bus that takes her to her program. I immediately dissolved a Levsin tablet under my tongue to relax the spasms. I don’t know what I’d do without that medication! I’m sure I’d wind up with ischemic colitis every time.

REPLY
@nova1976

The exact name was Cecal bascal which is another name for Cecal volvulous same problems with the affects of no ileocecal valve

Jump to this post

I give you my condolences. It's a very hard surgery to go through, and dangerous. Glad we both lived through it!

REPLY
@tiss

Nova, Are you talking about a cecal volvulous? Cecum is abnormally rotated and it is a congenital abnormality. I had a 6 foot long, tortorous colon which gave me trouble with constipation all my life. At age 60 I developed an acute bowel obstruction from the rotated cecum, which I never knew I had. 3 years ago I had a right hemicolectomy which saved my life. I don't have constipation problems now but having part of your colon removed can cause other issues. Has taken me a long time to get over the surgery and I do have chronic SIBO now due to no ileocecal valve and wide open anastomoses at resection site. I take Xifaxan every day for the SIBO. It's been a godsend.

Jump to this post

The exact name was Cecal bascal which is another name for Cecal volvulous same problems with the affects of no ileocecal valve

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

Yes on pain being 10 and fainting. I fainted last weekend trying to go from bathroom to bedroom. Came to on the marble floor staring at the bottom of the draperies....very scary. I hate this!

REPLY
@stuckonu

Hi les, since you asked for “ any thoughts on surgery “ I will first say that each case is different. In my case, while hospitalized the doctor assigned to me cane in with my nurse who knew me from being my nurse for three days. She was standing behind to doctor who came in and without much emotion said to me: we think that this small bowel obstruction is do to an adhesion from your appendectomy but we don’t know for sure. We would like to do exploratory surgery but need your approval first. My nurse was shaking her head in the “ NO “ direction. So I told the doctor no not at this time. After the doctor was gone the nurse came back and told me why she was saying no. She told me that she has been following every aspect of my stay and since the doctor said they didn’t know for sure and it was “ exploratory surgery “ she suggested that I modify my diet and to keep a journal of what goes in and what comes out and take notes on the details of all things that might be telling. I thought that she made sense and that’s what I’ve been doing.
Today I’m going for an X-ray and ultrasound. That this is scheduled almost two weeks after the episode seems to not make sense but they tell me it doesn’t matter if I’m not having an attack.
I’m doing as much research before I agree to surgery. The research led me to this site

Jump to this post

Very wise!

REPLY
@nova1976

I've had several surgeries for small intestine blockages after RNY bypass. Mostly caused by adhesions The blockages continued. The head of bariatric surgery at columbia hospital in NYC did the surgery himself and found involulus colon. I probably misspelled it. It's where the colon is twisted, pushed into the area of abdomin where's it should not be and telescoped into itself. He took out piece of colon, Cecil valve, piece of small intestine and appendix
That solve blockage and constipation problem but brought about Explosive diarrea (SIBO). Working that out now Feels like adhesions coming back now
But that is for another day

Jump to this post

Nova, Are you talking about a cecal volvulous? Cecum is abnormally rotated and it is a congenital abnormality. I had a 6 foot long, tortorous colon which gave me trouble with constipation all my life. At age 60 I developed an acute bowel obstruction from the rotated cecum, which I never knew I had. 3 years ago I had a right hemicolectomy which saved my life. I don't have constipation problems now but having part of your colon removed can cause other issues. Has taken me a long time to get over the surgery and I do have chronic SIBO now due to no ileocecal valve and wide open anastomoses at resection site. I take Xifaxan every day for the SIBO. It's been a godsend.

REPLY
Please sign in or register to post a reply.