1. < Digestive Health

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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rushinroulet | @rushinroulet | Sep 27, 2023

Hi Jayne. I don’t have a redundant colon. I do however have serious small bowel issues from the removal of a 9lb benign tumor and then having a 4 inch piece of my omentum lodged in my small intestine for a year and half.
After my 3rd surgery I was told to use fodmap and I just got sick. Constipation dehydration bloating early satiety lethargic and so on. For weeks.
After 9 years of trying everything including drinking up to 2 gallons of water a day. I know follow a low fiber diet, drink a minimum of a gallon of water a day, move often, and don’t eat certain foods( low fiber or not)
This is not your solution, it is a trail and error, but maybe this will help.
No one understands how sick you can feel during a flare up and how frustrating it is that there is so little help. Good luck, and last do not just rely on doctors every person is different with complicated intestinal issues, literally listen to your gut.

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cherawgirl | @cherawgirl | Sep 27, 2023
In reply to @cherawgirl "Have a stool test! I had similar symptoms for years! Turned out to be Exocrine Pancreatic..." + (show)
@cherawgirl

Have a stool test! I had similar symptoms for years! Turned out to be Exocrine Pancreatic Insufficiency ( pancreas not producing enough digestive enzymes).

I also have torturous colon. Only 2 of last 3 GI could complete colonoscopy. I keep being told it’s not possible for it to cause abdominal pain 😕

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So…went to Mayo gastro to find out why I have EPI. TURNS OUT I DON’T,! Two endoscopies and colonoscopy later turns out to be SIBO. Who knew. Appears a stool test can be misleading about enzymes. Dr. said I have a pancreas of a 20 year old 🥳

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juliehd76 | @juliehd76 | Sep 27, 2023
In reply to @cherawgirl "Have a stool test! I had similar symptoms for years! Turned out to be Exocrine Pancreatic..." + (show)
@cherawgirl

Have a stool test! I had similar symptoms for years! Turned out to be Exocrine Pancreatic Insufficiency ( pancreas not producing enough digestive enzymes).

I also have torturous colon. Only 2 of last 3 GI could complete colonoscopy. I keep being told it’s not possible for it to cause abdominal pain 😕

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Gosh..my GI said it was challenging but got the EGD completed...I had anesthesia to give propofol so very smooth procedure...a week out and FINALLY got some nuggets out..still nauseated from constipation..bloated...I'm seeing him tomorrow

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juliehd76 | @juliehd76 | Sep 27, 2023

I do not see a trial of Linzess in your comment, gosh removal of some colon seems unbelievable and drastic!! The recovery and pain...no thanks..I've increased my fiber..I drink a ton of water...linzess did nothing for me...I finally went (poo)and its been a WEEK since my EGD..Im going to see GI tomorrow for some help...I feel fat nauseated and miserable...Im a very seasoned nurse so I wont take bs for advice...

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dablues | @dablues | Sep 18, 2023
In reply to @bosslady72 "I’ve found out this year about having a redundant colon. This is very traumatic for me...." + (show)
@bosslady72

I’ve found out this year about having a redundant colon. This is very traumatic for me. I’m usually sick the majority of the time dealing with constipation. The pain of bowel movement of any kind is truly torturous in every aspect of the condition. I’m needing a doctor that has the patience to listen and understand that I need help daily. Not just from meal to meal, but the entire digestive process, of which is painful to endure constantly.

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Yes, I do! Just had a colonoscopy and this time no problems. Found one pre-cancerous polyp.

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researchmaven | @researchmaven | Sep 18, 2023
In reply to @bosslady72 "I’ve found out this year about having a redundant colon. This is very traumatic for me...." + (show)
@bosslady72

I’ve found out this year about having a redundant colon. This is very traumatic for me. I’m usually sick the majority of the time dealing with constipation. The pain of bowel movement of any kind is truly torturous in every aspect of the condition. I’m needing a doctor that has the patience to listen and understand that I need help daily. Not just from meal to meal, but the entire digestive process, of which is painful to endure constantly.

Jump to this post

If I eat the wrong foods, I can definitely have the pain you describe. I don't eat like everyone else. I drink a lot of my food -- blended or chunky vegetable soups, cooked hot cereal, nothing raw (too hard to digest), only fish, lactaid-free milk, egg whites and protein powder. And more, but I may have more issues than you. I always drink something, to help move things along in my extra-long redundant colon. Water is great for that - just sip throughout the day.

Consider a dietitian -- one that specializes in GI issues. A lot of virtual appointments are available now, so they don't have to be within driving distance. I don't use one, but if you are looking for expert advice, that may be a good source.

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researchmaven | @researchmaven | Sep 18, 2023
In reply to @dablues "Yes, and I'm scheduled for another Endoscopy and Colonoscopy of 08.28.23 if I can find someone..." + (show)
@dablues

Yes, and I'm scheduled for another Endoscopy and Colonoscopy of 08.28.23 if I can find someone to take me. The person who is supposed to take me might not be able as her brother just had a heart attack. I get pre-cancerous polyps and also have AVM's in my colon, and esophagus and don't know if they are anyplace else. I'm sick of feeling sick and I'll be 82, and have had to have these colonoscopies since I turned 44. Colon Cancer runs in the family. They get stuck in two places when doing colonoscopy and the last one I had in 2021 they couldn't get to the ilium don't know that is spelled right. I'm tired of trying to find out what is wrong with me.

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A normal colonoscopy takes about 20 minutes. I have a severely redundant colon and my gastro doctor took 60 minutes to do it. I also didn't clear out completely, even with an extra day of prep. Somehow it was dealth with.

Some folks in this discussion group have a longer prep procedure -- I will try that next time when I am due. With a history of colon cancer in your family, your doctor should be taking the extra time to navigate your colon.

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burghgrl | @burghgrl | Sep 18, 2023

Hi Jayne- I have it too- apparently many more than I ever knew of & were all looking to take care of ourselves without surgery! I don’t know how that doctor can say you’d regret not having it!

I manage extremely well on the regimen I follow- I’ve just posted it on this site, this group- but please don’t lose hope. You can Do This!! Self management is the key! ❤️❤️

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bosslady72 | @bosslady72 | Sep 17, 2023
In reply to @denisep "Hello. I also have a redundant colon. I am 51 yrs and have been constipated all..." + (show)
@denisep

Hello. I also have a redundant colon. I am 51 yrs and have been constipated all my life. Thought it was normal to have a bm every week-10days. as I became an adult I started experiencing excruciating pain in the abdomen. Noticed it alway happened after eating certain foods like pasta, pizza, etc. I would just suck it up and deal with the pain. I started seeing my doctor about the chronic constipation and pain. He had me try several different meds and combinations of meds. After learning that my Grandmother who died of colon cancer at age 42 (before I was born) I went in for a colonoscopy. Thats when I was told I have a redundant colon and I was probably born with it. I have been seeing a couple different specialists at Stanford GI. Had a second colonoscopy and many embarrassing tests. I just started taking Trulance and I don't think it is doing anything for me. I now have been referred to a Motility specialist and awaiting the appointment. I will also be starting my 3 round of Physical Therapy to try to strengthen my pelvic floor muscles.

I wish I had some advise for everyone on this forum because it is a truly tortuous condition to have. I can say that if you cannot find a treatment that helps, don't give up! Make a list of all your symptoms and ask your doctor. Keep the pressure on him. If he doesn't know how to treat it, ask for a referral to a specialist like a motility specialist. Please keep posting to this site so we can learn from each others experiences.

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Thank you for sharing. I appreciate the transparency and feel a bit better knowing that I’m not alone in this. I’m more so scared about the fact that I could actually get blocked. I will start to be more active in pressing my doctors.

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bosslady72 | @bosslady72 | Sep 17, 2023

I’ve found out this year about having a redundant colon. This is very traumatic for me. I’m usually sick the majority of the time dealing with constipation. The pain of bowel movement of any kind is truly torturous in every aspect of the condition. I’m needing a doctor that has the patience to listen and understand that I need help daily. Not just from meal to meal, but the entire digestive process, of which is painful to endure constantly.

REPLY
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