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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@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.
Have y’all been tested for SIBO
Small intestinal bacteria overgrowth?
Thank you so very much for investigating! I discovered the same looking at other websites
@kjn72 - I can’t find any information about use of gastric pacemaker at Mayo for motility- except for gastroparesis.
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
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.
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.
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!
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.
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.