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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Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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@carndt - How familiar the inappropriate or 1/2 answer is to my emailed questions to my physician! I try to constrain myself to one simple question per email and space them out. Or I just repeat the email . And repeat. I shut my windows when I scream with frustration so I don't annoy my neighbors. It helps.
Gastroenterologist Dr. Robynne Chutkan has occasional live Zoom presentations I get some helpful ideas from. Below is the most recent interview of her I found on the web. It focuses on the sale of her most recent book but she covers constipation and bloating in some of her older books.

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Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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Have y’all been tested for SIBO
Small intestinal bacteria overgrowth?

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Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@kjn72 - I can’t find any information about use of gastric pacemaker at Mayo for motility- except for gastroparesis.

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Thank you so very much for investigating! I discovered the same looking at other websites

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Profile picture for kjn72 @kjn72

Thank you for responding.
I haven't tried Motegrity, $200 better than 600.00, not great though, it is a good idea to ration it.
I am researching gastric pacemaker for motility issues, found it only for gastroparesis.
Had to use enema last night, barely any response, 1st time that happened and it concerns me.
How can I learn if MAYO has tried gastric pacemaker for motility issues?
Thank you

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@kjn72 - I can’t find any information about use of gastric pacemaker at Mayo for motility- except for gastroparesis.

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Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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I am curious to learn if anyone has lower abdominal pain, right , ascending colon area, and left sided pain, descending colon area when FINALLY having a BM following days of constipation? I do. I get the same pain when using an enema every other day. I am trying to understand the reason for this pain. I do have a tortuous colon could with severe constipation.
Thank you for your help.
KJN

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Profile picture for Keith Moon @jcarndt

I agree totally about the doctors. I have two, one in the city where I live and one at a teaching hospital two hours away. We have video visits every three months. If I have a question for him, I have to go through his "gatekeepers" using the patient portal. THEY decide which messages are important enough to pass along. I often think they don't even take the time to read the entire message, because they only give me half an answer. Or an answer that does not pertain to me at all. Beyond frustrating. Getting them to answer a phone message is rare.
I'm at the point where I'm basically treating myself, except I cannot write a prescription. Our Medical system is beyond broken.

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I wish they would use the portal. My neurologist/headache specialist at Cleveland Clinic uses My Chart. My messages do initially go through her clinical team but then are passed through to her. “She” answers them herself. And if you reply with another question, it goes directly to her. I love her and that system works great! I wish I could find a gi that would do the same. It would change my life.

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Profile picture for sallyw133 @sallyw133

Yes, every day is an ongoing experiment for me, constantly tweaking up and down, trying to find that perfect combination. And dealing with drs is sooo frustrating. Called mine this week and thought his nurse understood my questions and what I was experiencing. Boy was I wrong! Somehow she took what happened after I took two Dulcolax after 6 days of no BM’s and conveyed it to the dr as watery diarrhea. He in turn said it was probably overflow. Seriously! I was in the BR for 8 hrs! I wish you could message them directly because now his advice is not accurate. So frustrating!
So I’m back to trying to figure this thing out on my own once again.

Jump to this post

I agree totally about the doctors. I have two, one in the city where I live and one at a teaching hospital two hours away. We have video visits every three months. If I have a question for him, I have to go through his "gatekeepers" using the patient portal. THEY decide which messages are important enough to pass along. I often think they don't even take the time to read the entire message, because they only give me half an answer. Or an answer that does not pertain to me at all. Beyond frustrating. Getting them to answer a phone message is rare.
I'm at the point where I'm basically treating myself, except I cannot write a prescription. Our Medical system is beyond broken.

REPLY
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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I am 64, diagnosed with redundant colon and acute diverticulitis. Spent 5 days in hospital and 2 ER visits over Halloween. The antibiotics are too harsh for my joints. I’m currently trying turmeric, diverticulitis tea, slippery elm and a few other natural approaches. Seeing my gastro this next week. Hoping to avoid a surgery, but if it will help avoid these episodes in the future, I am willing to proceed. This has been horrific!

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Profile picture for Keith Moon @jcarndt

Thank you for the information, Sally. And good luck to you. Presently I'm taking Prunelax, 2 colace and 400 mg of magnesium at bedtime. I get up early and take prune juice with coconut oil, Linzess and a big cup of coffee. In about an hour, (usually) things start moving. Unfortunately, I'm stuck in the house until at least noon. This is probably overkill, but every time I experiment ( and we're all just a science experiment, aren't we ?) it throws everything off. And like you if I don't go every day, I'm in big trouble.

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Yes, every day is an ongoing experiment for me, constantly tweaking up and down, trying to find that perfect combination. And dealing with drs is sooo frustrating. Called mine this week and thought his nurse understood my questions and what I was experiencing. Boy was I wrong! Somehow she took what happened after I took two Dulcolax after 6 days of no BM’s and conveyed it to the dr as watery diarrhea. He in turn said it was probably overflow. Seriously! I was in the BR for 8 hrs! I wish you could message them directly because now his advice is not accurate. So frustrating!
So I’m back to trying to figure this thing out on my own once again.

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Profile picture for sallyw133 @sallyw133

At my initial visit, he advised starting it at one three times a day then second day go to two three times a day, Woow, Way too much. Called back. Here the fellow I met with first messed up what I was currently taking. So, now taking 1/2 tab 3 times a day. Also be sure to take on empty stomach. Told me I had to give it two weeks. If no BM after 4-5 days, use Dulcolax. Also use IBGuard every day.
Well, I’ve had mixed results. That alone isn’t enough. When I try to bump up dosage very much, side effects. Night sweats, insomnia, “brain zaps”. I’m ok at a whole one at mid-day, but no more. He says he thinks 3-4 BM’s a week are good. Not for me. If I don’t go most every day, I don’t feel good. But overall, this is the best I’ve felt in ages. I felt terrible on Motegrity, which was my previous dr’s go-to drug. Always nauseous. So I don’t want to give up on it yet. I’ve been adding in a little Miralax. A little mineral oil. Trying to avoid the big Dulcolax purge if possible, which will keep me in the house at least a day. I’ve had a call in to the gi since Monday for advice about adding something with it. Disappointed I still haven’t heard back yet. Thought this one was going to be better with that. Oh, I haven’t really noticed that I pee any more than normal, but I’m nearly 65 so I do pee a lot anyway, so it’s hard to
tell!

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Thank you for the information, Sally. And good luck to you. Presently I'm taking Prunelax, 2 colace and 400 mg of magnesium at bedtime. I get up early and take prune juice with coconut oil, Linzess and a big cup of coffee. In about an hour, (usually) things start moving. Unfortunately, I'm stuck in the house until at least noon. This is probably overkill, but every time I experiment ( and we're all just a science experiment, aren't we ?) it throws everything off. And like you if I don't go every day, I'm in big trouble.

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