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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@becky12

I'm in the same boat. Lifelong constipation (I'm 55) and bloating. I was diagnosed after getting yelled by the nurse for not being sufficiently empty for my colonoscopy. I drank every drop, but it had a long way to go to reach the exit LOL. My GI doc said next time we'll start a week ahead of time rather than 2 days.

Intermittent fasting has improved my bowels considerably, and I really hope, respectfully, to never be in your shoes! No fun! Hang in there:)

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I had a horrible gi dr tell me I didn’t clean out sufficiently after 4 days of barely eating, 2 days no eating and 2 days clean out. She was very rude and inconsiderate.

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Looks like you have everything under control! Am happy for you! I noticed you wrote "rid of the stomach issues surrounding my lack of gallbladder." May I ask what issues you experienced due to lack of gallbladder (GB)? Did you have cholecystectomy? Is it OK if you would please share those issues you had due to the procedure & lack of GB? It only stores bile, not essential, so I've read & been told. But I intend to keep all my body parts I was born with, unless they're diseased or causing pain & suffering & leads to other problems.

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@mycnctds

Looks like you have everything under control! Am happy for you! I noticed you wrote "rid of the stomach issues surrounding my lack of gallbladder." May I ask what issues you experienced due to lack of gallbladder (GB)? Did you have cholecystectomy? Is it OK if you would please share those issues you had due to the procedure & lack of GB? It only stores bile, not essential, so I've read & been told. But I intend to keep all my body parts I was born with, unless they're diseased or causing pain & suffering & leads to other problems.

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Hi there, my understanding is bile breaks down fat. The pancreas creates bile and sends to the gallbladder to store. The gallbladder releases when you consume fat. When the gallbladder is removed the pancreas still creates bile but has no where to store and drips it into the intestines slowly. I was suffering every time I ate anything high in fat. A hamburger, steak, loaded baked potato are examples. I would be up all night. Now that I take enzymes, I can pretty much eat anything. As a footnote, I had my gallbladder removed when I was 30 and now 60. Never had a problem until I hit 50. Hope that helps and is clear. I am frustrated with conventional doctors as they all knew I had my gallbladder removed and ordered endoscopy’s but never once discussed enzymes or probiotics with me.

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I may have to consider taking probiotics!

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At a loss as to what foods to eat can’t find much on it. I was told a couple of weeks ago to join a class but they have not contacted me yet.

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@marthamay

At a loss as to what foods to eat can’t find much on it. I was told a couple of weeks ago to join a class but they have not contacted me yet.

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What is actually going on? Not sure of what you have been dx with

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@sallyw133

I am same but also going to give a try, but maybe at a slower pace.
1 cup applesauce, 1 cup oat bran, 1/4 cup prune juice. Spices as desired. Cinnamon, nutmeg, etc. May be stored in frig or freezer (ice cube trays). Begin with two TBSB each evening followed by 6-8 ounces of water or juice. After 7-10 days increase to 3 TBSP. and then at end of second to third week increase to 4. You may have bloating and gas at beginning but should go away after few weeks. Should see improvement in bowel habits in two weeks. With us, though, who knows!!! As always, proceed with caution. I’ll probably start with one.
Thanks for your good thoughts in my journey!

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This is me my whole life. Thank you for this recipe. I'm 67 years old now I was treated for IBS-C never helped. Now Diverticulitis.

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@beaglemom09

I was told at my last 2 colonoscopy's (every 5 years due to my mother passing away from colon cancer at age 44) that I have a redundant/tortuous colon along with diverticulosis. The surgeon just says it and then walks away. Never an explanation of what it means. So I go home and research. I am 60 and suffered from constipation most of my adult life but it progressively gets worse. When I went to a GI doctor in Jan 2020, he said I have a lazy bowel and prescribed Linzess. I had tried all OTC meds that would work for a short time and then stop. Linzess has been the same. It worked for about a year, 72mg, then I went up to 145mg and I still take that but have to add Miralax and or Milk of Magnesia or laxatives. I have only ever gotten diarrhea (sometimes 6 a day) but at least I'm getting something out. So recently I went to see my Gastro docs PA. I cried during the appt about how this effects my life. I am sick of waiting half the day and nothing comes out or spending half the day running to the bathroom. I asked if this is what my life will always be. The doctors have never given me a clear answer. The PA had compassion (for once) and prescribed me Lactulose 2X day and upped the Linzess to 290mg. The problem is nothing works consistently! I can't spend the rest of my life around my BM schedule! But for now, that's what I'll have to keep doing. She also sent me for a Colonic Transit Study. I started that 3 days after my appt with her so I had to stop all constipation meds for 7 days. The first day they gave me the Sitz marker pill. The next 5 days in a row I had to be at the hospital the same time each day for an x-ray. The study showed all 24 markers on day 1, 24 on day 2, 24 on day 3, 19 on day 4 and 9 on day 5. The PA wrote back to me on MyChart, after I inquired what the next step is, that I should make an appt with my colo/rectal surgeon to see what he can do. She said I need to find a motility specialist. After all of my research on here and other websites and forums, I do not have high hopes that this will ever be fixed. I have already been through a small bowel resection due to peritonitis in 2006 from a doctor nicking my bowel during a tubal ligation surgery. I've had a hysterectomy in 2016, a partial small bowel obstruction in 2018, and breast cancer in 2020. Other then that, I'm pretty healthy! Lol.
I just thought writing in here maybe someone can relate and offer a suggestion. I have not made an appt with my colorectal doctor yet. None of this is cheap either due to our high deductible insurance. We pay 100 percent until $9100 deductible is met. Yikes, that's a lot of money! I'm sure you can all relate to this also.
Anyway, thanks for reading my long post. I empathize with all of you!!

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I don't have colon problems but i just had to sendca response to you. You have been through so much. I am so sorry to hear what you have been through.
I am 66 years old, my history is Sphincter of Oddi disfunction. 2 ERCP's, stenting of the biliary duct, perforation of the duodenum during stenting, stent dislodged, 3rd ERCP to remove stent, gall bladder got in infected, emergency surgery to remove gallbladder, developed pancreatitis, (also had total hysterectomy 25 years ago) now currently suffering with UTI, abdominal pain still, rt flank pain. Now upper abdominal pain. Cat Scan show nothing, MRCP shows nothing, amylasecand lipase elevated. Just stopped takin statin Atorvastatin and just had the 4th bivalent Moderna covid shot.
Have an appointment with a Urogynecologist in March. Not sure what is going on. You take care.
Keep me posted

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@colt1234

My heart goes out to all of you that have a redundant colon ! Our 5 year old son has that too , his colon is twice as long as it should be we finally found out when we took him to Mexico for more test ! Cuz here in Canada the docs. Kept saying all is normal ! and he’s suffered so much already no matter what diet we try ! Becuz if a colon is too long it has sharp bent areas where not even water can get through sometimes ! And one part of his colon goes way up over his stomach and when it presses on his stomach when there’s stool in there he very often can’t eat for a day or 2 etc. we have found out what helps a little bit for his colon to not get enflamed to often is plexus brand probiotic ,
Why are doctors refusing to take out some colon ?? In Mexico we found such a nice specialist who found the problem and gave us antibiotics for his very bad enfection in colon and another kind of pills to help stimulate his colon to push the stool through, but he said if that did’t help he’d need some colon taken out ,
Anyone out there that has had that surgery done ??
Should we get this surgery done for him in Mexico by that very wise specialist in Mexico ??

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Please take your son to CHOP Children's Hospital of Philadelphia, Pennslyvania
They are a wonderful hospital for chikdren.
My 44 year old daughter when she was 14 years old was diagnosed with a benign tumor on her spine.. we were told that once she had surgery and radiation she would probably never have children. 18 years later, healthy, married, mother to a 15 year old. 13 year old and 6 year old. The doctors were wonderful.
Prayers go out to all of you.
Take care

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