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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Had a virtual visit with my dietician yesterday. Though the low fiber diet has definitely made me feel better from the tortuous colon standpoint, I am still struggling with my slow motility. The diet does not help with that. She has suggested prune juice and smooth move tea to help with that. It does have senna so I am going to check with my gi on regular use of it.
I feel I must mention that though I am more than happy to share all my information, it does make me a little nervous. I know you all know this already but I don’t want anyone to try these ideas without consulting their doctors or to at least realize these are things that may be working for ME NOW. I went into the low FODMAP diet last year out of desperation, under the guidance of a trained dietician and ended up in the ER with an impacted colon. So, I am now cautious of what I read and what I try. But this diet is actually the same they use for gasteoparesis and I did run it by my gi. The tea actually did work really well!!!

REPLY

Hi @sallyw133 😊
Thanks so much for the update on your virtual visit. Don't be nervous about people taking advice. I think we all know that trying to find an answer to these colon issues is one huge personal experiment! "Too much fiber, not enough fiber, too much water, not enough water, what worked last week doesn't work this week, etc". But it's very helpful (and comforting) to know what people are trying and what seems to be working!
I smiled when you brought up prune juice and smooth tea because that was my sweet grandmother's answer to any health issue. She was from the old country, so her treatments never involved the pharmacy. All treatments came from her kitchen and prune juice was MAJOR! She lived to 98, so maybe she was on to something! ❤ Anyway, thank you so much for posting about your visit and reminding me to try my Nana's solution. I am going to buy some prune juice and smooth tea today and enjoy some loving memories.... Heck, maybe it will work! Thank you again @sallyw133 and please continue to post about your journey and I will too. 😊

REPLY
@sallyw133

Had a virtual visit with my dietician yesterday. Though the low fiber diet has definitely made me feel better from the tortuous colon standpoint, I am still struggling with my slow motility. The diet does not help with that. She has suggested prune juice and smooth move tea to help with that. It does have senna so I am going to check with my gi on regular use of it.
I feel I must mention that though I am more than happy to share all my information, it does make me a little nervous. I know you all know this already but I don’t want anyone to try these ideas without consulting their doctors or to at least realize these are things that may be working for ME NOW. I went into the low FODMAP diet last year out of desperation, under the guidance of a trained dietician and ended up in the ER with an impacted colon. So, I am now cautious of what I read and what I try. But this diet is actually the same they use for gasteoparesis and I did run it by my gi. The tea actually did work really well!!!

Jump to this post

@Sally123 - I appreciate the warning to keep in mind that your shared ideas are only what you are trying NOW.
I feel the same way about my shared info.
Traditional Medicinals Smooth Move Senna tea does work well for me also. I note that each cup of tea provides 20 mg of sennosides vs Wal Mart's Senna-S capsule at 8.6 sennosides per capsule. I'm curious to know what your gastroenterologist will have to say about it.
I appreciate all the shared ideas in this group.

REPLY
@hello1234

Hi @notmoff 😊
I agree with you about minimizing red meat in your diet to optimize your heart health and to prevent cancer. However, I also believe an occasional piece of lean meat has the benefits of iron, an excellent protein source, protein is good for bones, etc. I am stumbling around to find answers too. My philosophy has been to try to aim for a "little bit of everything" in moderation. I try to "eat the rainbow" (greens, sweet potatoes, carrots, beets, etc), I try to eat a little fish but try to avoid too much mercury, I try to eat a little bit of meat but try to avoid fatty cuts and antibiotics, etc. It's difficult to navigate food choices because everything has a ying and a yang. It's like my saline IV situation. I thought I was hydrating my kidneys, but I was actually doing great damage to my body and brain by over drinking the water. So, I try to do a little for each part of my body. My bones like dairy, my kidneys like moderate levels of water, my skin likes greens, potassium levels like a banana, etc. I think you and I ...and everyone on Connect are discussing options because there are no clear answers, that's why I like to hedge my bet! Let's keep sharing whatever we discover along the way! ❤

Jump to this post

@hello1234 - Moderation in all things sounds very sensible.
Thanks for sharing more information.
I'm planning to have fish for dinner, although I understand its better to have it early in the day - loosening my grip on my vegan direction.

REPLY
@notmoff

@Sally123 - I appreciate the warning to keep in mind that your shared ideas are only what you are trying NOW.
I feel the same way about my shared info.
Traditional Medicinals Smooth Move Senna tea does work well for me also. I note that each cup of tea provides 20 mg of sennosides vs Wal Mart's Senna-S capsule at 8.6 sennosides per capsule. I'm curious to know what your gastroenterologist will have to say about it.
I appreciate all the shared ideas in this group.

Jump to this post

Well that explains why I barely left the bathroom yesterday! Thanks for the info! Never even compared the amounts. Won’t do that again!

REPLY
@hello1234

Hi @sickofbeinsick1 😊
Wow, it sounds like your gastro doc added everything but the kitchen sick on your colonoscopy results! Do you feel okay or do you have symptoms? Do you have problems with constipation or so far, so good?

Jump to this post

I have symptoms from hell! I can’t eat solid food, I’ve been on a soft diet for going on 3 years. The thing is, after 5-6 colonoscopies, they diagnose all, but don’t give any treatment…other than “stop dairy”, FODMAP, hi fiber low fiber. It’s getting so bad, I had 4 bites of a fried chicken breast…spread out over about 2 hours, I was driving. By the time I got home, I was in excruciating pain & ended up vomiting 🤮. THATS a 1st…for me. Needless to say, I won’t do that again. I did have a whole breast just over a year ago, & I was ok 🤷‍♀️
I’m so lost & don’t know what to do. Soft diet is getting old

REPLY
@hello1234

Hi @sickofbeinsick1 😊
Wow, it sounds like your gastro doc added everything but the kitchen sick on your colonoscopy results! Do you feel okay or do you have symptoms? Do you have problems with constipation or so far, so good?

Jump to this post

Oh, I forgot…no, I’m not constipated, leaning towards the other way, which is (was) my normal up until…?

REPLY

I have been diagnosed with torturous colon. Several digestive tests were negative; I tried the fodmap diet for a month with no change. My only symptom is an enlarging stomach that I first felt about 2 years ago. It is still expanding, and now up to the waist. The gastroenterologist reported there is nothing that can be done.

I am puzzled about why a torturous colon results in an expanding stomach. I don't have much gas, nor bowel or digestive problems. There is no pain, but increasing discomfort.
Has anyone had this problem and gotten help for it?

REPLY

You may want to check out some of my previous posts regarding the low-fiber diet, especially if you are eating a high-fiber diet or taking fiber supplements hoping it will help. Again, this has been helpful for ME, but may not necessarily be the answer for you. But most on this group have found that drs aren’t often very helpful with ideas for this condition and we’ve gotten better advice from each other.
Note: caution with Smooth Move Tea! High senna content! May prefer to try Prunelax mini tabs first. Or just regular senna tablets. I learned this the hard way!

REPLY
@kalbin

I just wanted to share/vent here with you guys. I had an appointment this morning with one of the g.i. docs, and of course after 2 unsuccessful Colonoscopies their only answer is to do another one with a double balloon something or other at a hospital. Even a barium enema with 3 bags of barium didn't work. I also of course have a terrible time getting cleaned out enough. He also kind of implied that my successful weight loss could indicate cancer and that happened to his brother. I told him that my weight loss has been gradual, healthy and intentional and I don't ever remember telling anyone that losing 86 lbs over the last 14 months has been EASY. It still seemed to keep getting implied that the weight loss is due to something being wrong with me.

I've had blood tests twice in the past 6 months, a mammogram and a wellness check. Absolutely nothing wrong with me still but blood in my stool but it's been going on for a long time. Not anemic or anything. With otc laxative every day I've even gotten my life long constipation under control. This is all so weird. Any experience with something like this please let me know. Thanks!!!
So I reluctantly had to schedule this most likely useless colonoscopy for September. What if that doesn't work either?

Jump to this post

1st, congrats on weight loss…if it was intended. I’m not sure what good a colonoscopy can be if cancer isn’t a chance. These “GI” clinics are popping up all over, & that is ALL they do. If anyone on this site had a colonoscopy that actually found something besides ‘roids , polyps or diverticula, I’d be surprised if it’s more than a handful. It’s like colonoscopies are the big $$ maker now days

REPLY
Please sign in or register to post a reply.