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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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Yes I do I have had it for at least 8 years that I know of and have been having alot of changes going on in my body and I am scarred.
Denalynn - Just hearing your description is exhausting. I hope you find some relief occasionally.
I’ve been searching for a diagnosis for almost three years. It seems like drs just go with IBS when nothing else is obvious. I feel right now like I am a yo-yo. Every dr I see tells me something different. Slow transit, tortuous colon, dyssyrgenia. Add fiber. Don’t add fiber. Low FODMAP. No low FODMAP. I’m ready to pull my hair out! And I just feel sicker and sicker.
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1 ReactionI wish I knew. I did discover that most doctors do not take patients and our “woes” as seriously as we take ourselves. Not necessarily as a form of cruelty more than a sense of immunity and numbness they have built and conditioned around themselves from constantly dealing with patients. Many automatically think the patient is exaggerating or even lying. Not good for the folks like me who refuse to set high expectations and barely have the faith to show a smidgen of emotion anymore.
Up to two years ago, I was never constipated. It was quite the opposite. I have had symptoms of IBS for years. I live on the toilet and called it my throne. Only now it’s with the added pain of constipation. Makes me wonder if anything could have been done. We all know now, I do not have IBS.
How awful! How do you find doctors that will listen?
Sorry it was a team of 18 (God bless them) who worked on me, saving my life… and a 12- hour surgery I wanted to clear that mistake up.
I suffer. Period. I have been suffering, and I have accepted that I will continue to suffer for the rest of my life. I take it like a champ. I am a mother of four, wife, daughter, sister, aunt, friend, and most of all, a human being with symptoms that are (constantly and continuously) ignored. Five hours ago, I walked into my home dumbfounded by one of the countless colonoscopies in the past 18 years. Tortuous colon. Really? You don’t say? I want to understand the reason patients explain their most excruciating symptoms? Why will my doctors NOT comprehend my medical history? Why has my body been responding to pain with Vasovagal attacks? My placenta embedded and grew into my kidneys, urethra, bladder, and most of all, my intestines for the seven months I carried my child (yes, unnoticed by my Ob-Gyn doctors). I survived a 12-hour surgery, two cardiac arrests, DIC, 60 units of blood and platelets, life support, and a coma. With my intestines on a table during four + hours of the 18-hour surgery. That I have surgical staples which, instead of dissolving or removing, have formed muscle and tissue? I have adhesions. Out of many colonoscopies, I have not been able to prep for JUST the last two colonoscopies? Double or single- the prep simply does not work. After sacrificing my soul to my toilet for three days, all I have to show for it is a doable “murky” colon at best and an SMH from the doctor. That even pediatric scopes many times do not fit. I have had a laparotomy and had a small portion of my intestines removed because it was twisted into a ball intertwined with muscle and ruptured. I attempted to make an appointment with Mayo Clinic to no avail. Why do I feel my voice is irrelevant? I am confident that somewhere between my ignorance and irrelevance is the answer. Again, suffering is inevitable, but I did not survive to give up at this juncture. Nor will I ever give up my search for knowledge and not necessarily a cure or “the answer,” but a little comfort and relief. Good luck to all on your journey to wellness. Raise your voices- sometimes it is ourselves that we cannot hear, and only then will the physicians LISTEN to us.
I have been diagnosed with both a tortuous colon and a tortuous esophagus. I also have been diagnosed with multifocal atrophic gastritis. In spite of all of this, I feel good most of the time. I take Metamucil daily. Strive to eat a healthy diet and exercise in some way five days a week on average. I’ve also been diagnosed with an immunity problem, low IgA. I feel that each of these diagnoses interact with each other, but in today’s healthcare specialist driven practices I don’t feel I have a doctor who can connect all of these dots. Any thoughts on a physician or healthcare specialist to see? I like the idea of holistic medicine, a combination of eastern and western medicine combined, but that’s not easy to find either. Any suggestions or thoughts would be welcome.
to rodeo2step - Thank you. I just found "How to Use Mayo Connect" where I hope to find what to click on to view the most recent message first.
notmoff
the posts often start with the oldest to newest. You can change that at the top of the posts, but it seems to always default to " Oldest to Newest" which is confusing.