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Anyone else have a Redundant / Tortuous Colon?
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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Hugs to you, as well!
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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9 ReactionsI just had a gi recommend same as being “the” answer to my years of pain and suffering. Said it could give me my life back. I did join a blog but it sounds like I would be just trading one set of problems for another. I did agree to a consultation with a surgeon bc I was feeling esp awful that day. Why not hear what he has to say? Things would have to get pretty bad to get to that point. Newest Gi
Has me trying Bethanichol, an off-brand use to increase motility. Having varying success but I do “feel” better than I have in months. Also, daily IB Guard. And it really is helping. Not perfect, but he and his nurse are working with in hopes of
finding something that does work.
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3 ReactionsTo Sally, thank you very much for responding and for the info. I will ask my doctor about the medication.
@kjn72 - It sounds like you have very poor motility. The goal for you now would be to try medication that improves motility, along with some meds you are trying now.
I am now on Motegrity and Amitiza and it works ok for now. Much better than before when I only had laxatives.
One of my Mayo doctors also had me do warm water enemas twice a week for a few months. It did help some, but I’m not fond of it.
There are things to try before resorting to colectomy. Just make sure to stay in touch with the doctor
@astaingegerdm, thank you for replying. Yes, motility is very slow. I have tried many meds, including Amitza, Linzess, Trulance and many others. With Trulance, I had bowel movements felt bloated and uncomfortable all day, and I had numerous bowel movements daily (Trulance is $600.00 monthly for me, very expensive)
I don't want to trade problem for problem by having a colectomy. Have you heard of a gastric pacemaker to help with motility issues?
@kjn72 - I have read about the concept of a gastric pacemaker- that’s what we need! Are they in use?
Motegrity is a motility drug and moves things along at pace much better than what we are dealing with now.
It is also expensive, up to $200 a month. I ration it. I’m looking into getting it from a Canadian v pharmacy.
Medicare patients don’t qualify for manufacturer’s coupons.
Was on Motegrity for quite a while, also with Amitiza. Been through every other gi med. problem now is that’s where once I was using 1-2 mg of Motegrity, now 1/2 sends me to diarrhea. Can’t find right combo of meds to get normal stool. Either not enough to move, little more and it’s too much. At least the Bethanechol and IBGuard combo is the first in years where I don’t feel “sick” all the time and the pain is better, after a few days of not enough, then I go to Dulcolax. Not perfect, but it’s only one day a week I’m stuck in the house as opposed to almost every day!
I just asked about using enemas as opposed to a laxative to help get things moving. Thought maybe it wouldn’t be quite so disruptive to my whole day. Without asking TMI, could you tell me what you bought, just plain water, etc? It does sound unpleasant to be honest, but at this point in the game, whatever!
I’m in similar situation and a surgeon is waiting for me to schedule surgery for a Diverticular resection. I am 79 and don’t think I will do it. I use milk of magnesia 2 tablets at least once a week, I walk , water with Apple cider vinegar every day, swim, take papaya enzyme after a meal, eat prunes and juice, resort to one envelope of Pico Prep which is a prep for a colonoscopy when I feel the need. I have had flare ups for 10+ years. Its do all of the above or unpredictable surgery. I pray a lot. Best wishes, stay in touch.🥰
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