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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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022

In reply to @sickofbeinsick1 "I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain &..." + (show)

I had a hip implant that I thought was causing mine.

sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022

In reply to @sickofbeinsick1 "I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain &..." + (show)

I’m gonna sit by my phone ALL day today & see what happens

sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022

In reply to @sallyw133 "Had a virtual visit with a nutritionist/dietitian from my GI’s dept. She had more helpful advice..." + (show)

I’m glad you got some relief…sometimes, I don’t have to eat anything & the pain & bloat just starts…I can’t believe there are SO MANY diagnosed with ….tortuous, colon…! Would li,e sallw133 & tropicbev & anyone one else with this diagnosis to get together (virtually) of course, & see if we can find something we may have in common that could cause this…painful aggravating pain in the gut ….cuz I have no idea…if you know what I mean?

sallyw133 | @sallyw133 | Jul 15, 2022

Just my totally non-medical advice. Working with a dietician who has advised fiber is actually counterproductive for tortuous colon. I’ve been following a low-fiber diet and though, not perfect by any means, have felt better the past month and mostly better BM’s. Have had to add in some mag oxide and Miralax occasionally to move things along and must drink a lot of water. I’ve also been under a huge amount of stress last too weeks with two new diagnoses to deal with.

notmoff | @notmoff | Jul 14, 2022

I increased my use of water, fiber, and most importantly, supplemental senna, Miralax and stool softeners to prevent obstipation following a compression fracture.

I have now been diagnosed with hyponatremia and urged to immediately go to the ER for a saline iv. My complying resulted in sitting in the crowded ER for 6 hours last night, told they had no empty room necessary to insert the iv and just to quietly wait for an empty room, without drinking any water or risk death. I returned home, didn't die but discovered that I had likely induced this condition by taking too many laxatives and water.
Sounds unlikely but true. Subsequent calls = same answer - return to ER and wait.

elizwmuller | @elizwmuller | Jul 13, 2022

I had Neomycin, 500mg 2x per day for 14 days. It definitely made an improvement. But I’ve had to do it several times (about 8 mos apart). Good luck!

Keith Moon | @jcarndt | Jul 13, 2022

In reply to @elizwmuller "Hi, Amy – I’m not sure if you’ll get this because you wrote your message 3+..." + (show)

@elizwmuller

Hi, Amy – I’m not sure if you’ll get this because you wrote your message 3+ years ago. I could’ve written it myself! You and I are in the exact same boat and I have never read anybody else’s situation and had it be as similar to mine. I am also a runner, long distance, and discovered recently that the only thing that allowed me to do well after eight or 10 miles was if I restricted my diet to the MOST bland of the low FOD map and gluten-free foods hard-core for about four days prior to a race and I would do a big clean out with a prescribed laxative, the kind they use for colonoscopies, the night before or two nights before the big run. That was such a wonderful discovery because it allowed me to run long distances and not have any problems. I haven’t done it for a little while and I think it’s causing problems. I think I need to do a clean out every couple weeks just to feel good, but I’m not sure if there’s any harm in that. I am on Motegrity for my constipation which seems to be helping but I still have so much gas and discomfort! I also have SIBO and have had to do several rounds of antibiotics. I am on a low FOD map diet pretty much all the time, avoid garlic, onions, and artichokes like my life depends on it, I’ve been gluten-free for the past eight years, and am mostly dairy free but have cheddar cheese a couple times a week. I’m starting to think I might have to give that up as well. My one and only really big vice is red wine. I drink it every day, and usually two glasses or more. I’ve never read anything about that affecting my IBS but I have to think it might. I try to drink a bunch of water to compensate, especially when I’m training. I can’t even consider something like fiber pills. Metamucil made me feel like I was dying. I am trying to figure out if I could do a hysterectomy, which is warranted for other reasons, and if that would help my colon issues. I literally dream of having part of my colon removed because I’m so tired of dealing with it on a daily basis. It’s nice to know that other people are suffering the same way I am; that sounds cruel I know, but it is true that misery loves company and I hate feeling like the only food-deprived, utterly uncomfortable, bloated and gassy freak that I feel like most of the time. I hope your issues have gotten better in the past few years and would love to know any tips that you have discovered if so. Thanks!
-Elizabeth

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Can you tell me wich antibiotics you have tried for the SIBO ?

notmoff | @notmoff | Jul 11, 2022

In reply to @sickofbeinsick1 "I TOTALLY get that! I’m 5’ 2” , I weigh 130, I have to wear maternity..." + (show)

To: sickofbeinsick1 AKA Tina
Thanks for the details although you may tire of reciting them as I am of repeating all my symptoms and "issues". I have a few more issues than you have, but I will spare you. I haven't had a hip implant, however. My issue is serious weight and muscle mass loss, not gain.
A few of your ideas give me hope and if you have time, I'd like to hear more . . .
1. Maternity underwear? Like you, with any pressure anywhere on my trunk, the usual pain increases quickly so I limit my time in public where I try to look presentable. Can you suggest any online sources of big, stretchy maternity underpants that don't fall off? How do yours stay up? Stretchy throughout? Although I am 5'4" (was 5' 9" before compression fractures) and 103 lbs, my bloated tummy is VERY large.

2. Protein shakes/powders? - I'm new to protein shakes but bought some soy milk powder to mix with water, peanut butter, maybe a frozen banana and some dates but I think there are higher protein ingredients. Any suggestions?

It sounds like you have made a LOT of progress. Normal underwear and nice clothes may well be in your future!

sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 11, 2022

In reply to @notmoff "In response to: sickofbeinsick1. AKA Tina It's good to hear you found foods that agree with..." + (show)

Hold on everyone….I fear another “shutdown” may be in our not too far off future.
God help us all

sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 11, 2022

In reply to @notmoff "In response to: sickofbeinsick1. AKA Tina It's good to hear you found foods that agree with..." + (show)

I TOTALLY get that! I’m 5’ 2” , I weigh 130, I have to wear maternity underwear. As far as “clothes”, I wear mostly moo moos “sundresses” or anything like that. I can’t wear anything snug at all. If I put on shorts or anything that meets my middle section “waist”, within a matter of minutes, I HAVE to take them off because it starts my stomach pain. I know it sucks!
It’s quite frustrating, especially if I’d like to go out & look decent. It has to be a dress….God forbid go out to eat. My GI for 8 years had me on a trial & error diet…in retrospect, I should have gone elsewhere. But she’d tell me stop dairy, no fried foods…yada yada. These were things I’ve eaten / drank all my life. I don’t know what your besides “long tortuous colon”….that’s what they told me “but it’s nothing you’ve done”. But I found out after years of CAT scans, ultrasounds…nobody EVER found anything until my GI of 8 yrs told me, “all your gut issues could be caused by my hip implant, & Not a Dr. In the world would admit it”. That was my last visit with her. I got REALLY sick…bloated up to 170 lbs. got hip rev, stayed on soft foods, am back to normal weight, but STILL can’t wear normal clothes!
I feel your pain & discomfort. It still flares up now & then, even if I’m not eating…I have noticed that if I get really stressed, it can happen. It hurts like hell. 🤷‍♀️
I’m pretty sure I posted b4 what I “eat / drink”…. Any juice, prune, V-8, water water water, potatoes, green beans, soup, protein shakes, milk shakes….& sometimes an ounce or 2 of Jagermeister can help….not always, but more than not. That’s just me. Can’t wait til I can wear normal underwear / clothes…but at this point, I’m not holding my breath.
Good luck to you 🙏

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