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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sallyw133 | @sallyw133 | 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 in if someone can set it up.

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

Well I know I didn’t inherit mine…my family (all girls now) have NO issues. But I agree with you on so many procedures….I’m starting to think all the scopes & everything else, may be exacerbating the issue…I found a “new” GI & of course, that’s the 1st thing she wants to do….even ‘tho my last was only 2 yrs ago🙄

tropicbev | @tropicbev | 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 believe I was born with a long and winding colon. My father suffered from this, as did his brother. Which is interesting because I'm told it is more common in women. My dad had to have surgery for a strangulation and so did I. My uncle had the same thing and had to have a resection as well.

I also believe that multiple abdominal surgeries contributed to my problem. First, the surgery to correct the strangulated colon, then a hysterectomy, then a bladder lift. All these invasive surgeries created adhesions! I'm sure that wreaks havoc on my redundant colon. The symptoms got worse after my most recent surgery which was the bladder lift. I hope I never have to have another abdominal surgery every.

I went to a colorectal surgeon who said surgery for redundancy is only done as a LAST RESORT, if nothing is passing through even with medication. So I will live with this for the rest of my life I'm sure. Thank goodness for this platform so that we know we are not alone.

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 ?

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