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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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I don't quite understand (but I think that is your point) by " this is worse as I couldn't hardly get up colon." and "you could never have surgery and eat high fiber diet". What is an OP Procedure? What I do understand is "take whatever" and looking pregnant. notmoff 3/10/22 8:40 am PT.
When are you writing? In March 2022?
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1 ReactionGood morning @notmoff
Its 12 noon here on east coast March 10, 2022.
Sorry I was so hard to understand.
OP means outpatient procedure. (I worked in medical field,)
I don't write much here as I am a newbie. But my meaning was in was frustrated and felt alone. I have had issues my adult life with my colon. The first colonoscopy I had was in 1991 and was told my colon was like a "roller coaster". It was a terrible experience so I waited until I had to. That was several years ago and cant remember year, but has redundant colon and precancerous polyps (removed). I waited the required 5 years and had a repeat colonoscopy. This time the doctor said I had a "tortuous colon" which was "worse than a redundant colon and you can never have surgery". He promptly left and i was still groggy and questions came later. I was just relieved I had no polyps and it would be 10 years before another.
I have read comments here on this page and have been helpful. My regular doctor retired so I think I am scared . Why my big tummy, constant constipation and what kind of surgery does one need with a tortuous colon?
Trishh
Good luck, I hope it works for you. If nothing else, the stretches feel really good.
Hi Trishh - Thanks for the date/time and reply. Now I understand you are a live human, probably on the East coast.
Thanks for the additional information. Like you, and probably a lot of others in this Mayo Clinic group, I have a big tummy, frequent constipation but so far, no curiosity about surgery. Reading that the scar tissue left behind after surgery causes even more problems is discouraging.
An additional issue I have had for several years is quivering gut that seems to have migrated elsewhere in my trunk area. It interferes with my concentration. Also, the sound of liquid sloshing through my gut has disturbed my sleep.
I am going to try to attach a link to a googled article written by a South Indian lady gi I found about difficult colonoscopies with redundant colons below, probably old news to you. I think the lady may be selling something, but I learned a little from it. If you have found helpful articles, please share.
Oops! My reply was blocked because new members aren't allowed to attach links. So I removed the link. If you have any to send me, I would like to have them as I gather more information that my Dr. is too busy to give - "just take a laxative!"
My solution so far is floppy clothes, immediately answering nature's call and drinking water with chia seed in it.
notmoff 3/10/22 noon
I switch between Renu life Cleanse More, Shacklee herbalax, and Natures Sunshine LBS.. The first one uses magnesium, the other two have stimulants cascara segrada,or senna.
Thanks!
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.
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
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.
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.