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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artist01 | @artist01 | Jan 31, 2021

In reply to @goatlady "I am going to start drinking more water today and see if that helps." + (show)

Right ON, @fighter!!! You keep on that fightin' ! I wish you all the luck in the world!

artist01 | @artist01 | Jan 31, 2021

In reply to @goatlady "thank you, that gives me a good starting, unfortunately I have to give up a lot..." + (show)

Hi @goatlady. And remember, we've all had to give up many of the foods we love, in order to see our health improve.
Its SO worth it to get a better quality of life. And, misery loves company! lol. We're all in this journey together, and we have the full support of our fellow-sufferers on Mayo Connect.
My best to you.

goatlady | @goatlady | Jan 31, 2021

In reply to @artist01 "Hi @goatlady. And remember, we've all had to give up many of the foods we love,..." + (show)

Thank you!!! I am going to give a try today. I am so grateful that I found this group!!! This is going to be hard, but my health is worth it. Thank you all for your support!

artist01 | @artist01 | Jan 31, 2021

In reply to @goatlady "Thank you!!! I am going to give a try today. I am so grateful that I..." + (show)

Good luck, @goatlady! You can do this!

goatlady | @goatlady | Feb 3, 2021

In reply to @artist01 "Good luck, @goatlady! You can do this!" + (show)

Well, I have gone three days on low Fodmap diet. Felt OK for the first two days and, for reason, today I am real gassy, not sure why. Have to look back and see what I ate yesterday. Also, I have a lot of mucus when I go to the bathroom. Is this normal? I think I need go back to my Primary Doctor and ask for another referral to a different GI doctor. The GI Doc that did my colonoscopy said everything was fine, but yet in her notes of the procedure said that she had a difficult time doing the colonoscopy because I had a tortuous colon.

artist01 | @artist01 | Feb 4, 2021

In reply to @goatlady "I don't understand why the GI doctor didn't say anything to me about my tortuous colon??..." + (show)

Hello @goatlady. I do hope you've asked for a referral to a new GI. When you were able to read your present GI's report and saw the results, him telling you everything is "fine" is not fine! It's SO important that we can trust our medical professionals and get the care that we need and deserve.

goatlady | @goatlady | Feb 4, 2021

I am going to try to get another referral, my Primary Care doctor is out for the week. I will talk to her when she comes back. Thank you for all your help

artist01 | @artist01 | Feb 4, 2021

In reply to @goatlady "I am going to try to get another referral, my Primary Care doctor is out for..." + (show)

So glad you plan to seek a GI referral. Good luck!

judy75 | @judy75 | Feb 12, 2021

In reply to @artist01 "So glad you plan to seek a GI referral. Good luck!" + (show)

I apologize for using the Reply as I'm new to this site and don't know how to ask a question. I had diverticulitis at the end of Oct 2020 (second time - first was back in 2008 when i was in the hospital for a week). But I fell down the rabbit hole with anxiety, couldn't eat and now it's Feb 12th and I've lost about 25 lbs. Had my colonoscopy on Jan 13th 2020. GI dr couldn't complete the colonoscopy as I have something call tortuous colon and he couldn't get the scope through. He referred me to get a virtual CT scan (no fun). The colonoscopy and virtual scan came back normal except for this tortuous colon. I'm still anxious and finding it hard to eat. And then I deviate between having a lot of BMs or constipation. I also have internal hemorrhoids which occasionally makes my butt hurt when I sit. I'm just a basket case of worry. I'm constantly calling the GI's office. I'm sure they're getting tired of hearing from me, but all this makes me scared.

sher71 | @sher71 | Feb 12, 2021

In reply to @judy75 "I apologize for using the Reply as I'm new to this site and don't know how..." + (show)

Hi Judy, I too have just recently been diagnosed with Redundant, Fixed, Ridged colon. I requested a consult with a nutritionist and that has given me even more questions! I've been searching the web for different solutions to constipation and found a lot of different approaches. I don't have diverticulitis so your probably much different from me. I have horrible constipation and never get "the runs". I recently got a book called "what the heck should I eat" and am reading it now. It's not directly addressing my issues but it is VERY informative. I recommend it. I too had lost a lot of weight, was down to 98 lbs. (5'2") :o( But of course, my gut was bloated and "angry" so I looked about 3 months pregnant. YUK. The bloating, not being able to get rid of gas, and not pooping were driving me crazy. I just want to feel normal. It certainly makes it hard to do anything in a social setting and 'romance' has been out of the question. I'd love my life back! I feel best when I don't eat. You too? Ok, so things I'm doing to try to help myself. First, water. LOTS of water. I fill a jug with the ounces marked on it every morning and that makes it easy to track how much I've had for the day. My goal is 60 oz. (more than 1/2 my weight in oz.) I started a food journal, keeping track of everything I eat and drink. I make side notes if I feel gassy or bloaty after I eat that food. I write if I had a BM that day or not and the consistency. I am trying 2 stool softeners and 1 500mg Magnesium every night and eating a low fiber diet. I need to get back to walking everyday, which I've skipped because I felt so bad. But even if you feel bad the walk makes you feel better. It's winter here and icy and cold! So I just purchased a treadmill. Hoping that makes a difference as well. Don't ever feel like your Dr.'s office is getting tired of you. You are your own advocate! You need to keep asking and get referrals if they can't help. I'm finding that most Dr.'s don't deal with this well. Let me know if you want to chat or have questions. We're all in this together. Hope this was helpful. Sometimes its just nice to know your not alone. :o) Sherrie (Pete is my nick name)