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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@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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Elizabeth, I hear you and I feel your pain. I am in the same position and was forced to have a hysterectomy. Turns out my uterus had a fibroid growing on it, but it wasn't able to be imaged bc my colon covered so much space. Fast forward a year, i have still been in the ER for abdominal pain from ovarian cysts and painful-near proliferation like symptoms. For the last 6 months no one has been able to image my right ovary with transvaginal or abdominal ultrasounds. Gyn's send you to Gastro's and vice versa. Both send you to Psych or Neuro. I am grateful for the hysterectomy though. Gave my tummy more room, but now over a year later my organs seem to shift even more. Looking into resection surgery bc I feel like I'm losing my mind

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@jenburke

Elizabeth, I hear you and I feel your pain. I am in the same position and was forced to have a hysterectomy. Turns out my uterus had a fibroid growing on it, but it wasn't able to be imaged bc my colon covered so much space. Fast forward a year, i have still been in the ER for abdominal pain from ovarian cysts and painful-near proliferation like symptoms. For the last 6 months no one has been able to image my right ovary with transvaginal or abdominal ultrasounds. Gyn's send you to Gastro's and vice versa. Both send you to Psych or Neuro. I am grateful for the hysterectomy though. Gave my tummy more room, but now over a year later my organs seem to shift even more. Looking into resection surgery bc I feel like I'm losing my mind

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Hi, I have a torrutous colon/Diverticulosis/ibs-c. TC caused IBS-c, which caused Diverticulitis attacks. I am scheduled for resection this month. Decided to do before it became an emergency But, in past had issues with scans due to colon being in the way.

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I have just been diagnosed with a redundant colon . But I don't suffer from constipation . What I do get are bouts of gastic pain , vomiting and a little diarrhoea. These happen about 5-8 times /year and last between 6-10 hours . Then they suddenly stop. Ive had some tests ( CT scan and blood tests) but they have only found this 'redundant colon ' condition - all else normal so far . Does anyone else have similar symptoms?

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I do! I believe I know how it happened as well. Now I have pain in 2 places when standing for very long at times. I feel it has to do with the consistency of the material passing through making the colon a bit fatter and it presses on nerves causing the pain. I have no idea as to what to do. My gastro has been No Help other than the diagnosis.
If anyone has ideas I’d love to hear them!

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My appendix ruptured in 2015 also had sepsis. Since then I have had three incisional hernia surgeries two with mesh. Now surgeons won’t perform surgery for my tortuous colon, mobile cecum and adhesions. I have been told surgery is difficult when meshes are in place. I get obstructions which puts me in the hospital for a few days with a NG tube.
I take MiraLax and stool softener daily. That makes me spit out a small amount of diarrhea daily. My multiple CT scans show that my cecum is constantly on the move and I always have a partial obstruction. I am mostly on a liquid diet.
I am waiting for a referral to the Mayo Clinic as Reno, NV doctors say they don’t have the expertise and Stanford surgeon has gaslighted me then does not return my emails.

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I was just diagnosed with this in Scottsdale. I am also curious about research and surgery possibilities. Mine seems to be interrupting urine flow.

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@lazycatdayz

I also have a redundant colon, transverse and sigmoid. Saw a colorectal surgeon who suggested further testing, consider laparoscopic sigmoid resection. Putting that on hold and trying to manage it with lifestyle and strengthening pelvic floor. I agree it is hard to know what to eat because of course we worry about obstruction! I have been able to increase my fiber intake (about 20-25grams) gradually as long as I’m drinking 2 L of water and taking 4 ounces of warm prune juice at night. Since I’ve done that, I am getting much better movements and not having as much abdominal pain since I am clearer. This condition sucks. Wishing you the best of luck.

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Hi, I also have a redundant colon, transverse and sigmoid. I was recently hospitalized for a blockage and sigmoid volvulus. I did not have a resection "yet". I am being pushed by just about everyone to have this surgery before the redundant colon twists again but I am trying to control this with diet. I am new to this forum and learning a lot. Thank you everyone for posting. Did you end up having the laparoscopic sigmoid resection? If so, how did it go and how are you doing? Thank you!

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@brianne613

Hi, I also have a redundant colon, transverse and sigmoid. I was recently hospitalized for a blockage and sigmoid volvulus. I did not have a resection "yet". I am being pushed by just about everyone to have this surgery before the redundant colon twists again but I am trying to control this with diet. I am new to this forum and learning a lot. Thank you everyone for posting. Did you end up having the laparoscopic sigmoid resection? If so, how did it go and how are you doing? Thank you!

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Sorry you are going through that. No, I did not have any surgery. I have been managing with diet and hydration. Having daily bowel movements without laxative use other than prune juice. It is concerning that you have had a significant obstruction, so in my opinion, I would follow the advice of the colorectal surgeon. From my understanding, the laparoscopic sigmoid resection has a short healing time and is a well tolerated procedure. Wishing you the best of luck.

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Hello! I was 44 when I was diagnosed with redundant colon three years ago but doctor never pointed out the cause of my chronic abdominal pain was related. I changed my diet completely: no lactose, no gluten (wheat, corn, oats, etc), no sugar.. i included green juice and giger-curcuma infusion on daily basis also, i started activities to handle the stress: meditation, yoga and substitute the swimming training because pandemic closed my pool for biking ... It helps a lot. However, i had another crisis two years ago and i decided to check out the ovaries and uterus the gynecologist did a exploratory laparoscopy and it was needed a gastro because they found adherences and it was need it to clean them up. I didn't have previous surgieres which it is the most common cause as fas as i have read... after that i was better... being very careful with my diet ... however, i am having a new crisis I went out of the strict diet and i am planning to go back to full gluten free detox (bye bye popcorn) i started Yoga at home again (my pool is being fix so i am again without swimming training) ... but I honestly will like to go to doctor and tell him: open me and reduce the colon and clean everything up again... otherwise i will do my self. I am the only income of my family and i don't get sick leave for this... and it is really hard to work with constant pain and discomfort
Hope, science finds a solution for this... Let you know how my new detox goes...

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I have had this for sometime and waiting for a referral to the Mayo Clinic. My additional issue is I have two meshes from previous incisional hernia surgeries. No one wants to do the surgery.
I have tried gluten and lactose free along with FODMAP diet. I find none of it helps as this is a mechanical issue on the outside not the inside. Be that said, too much roughage is not good. My GI doc says I am always partially obstructed. So far, I have been able to clear obstructions with an NG tube and time in the hospital. My fear is that at some point it won’t help.
My dietary help is to not eat too much at one time and to have a mostly liquid diet so I don’t build up too much content. My bowel movements and urine output it small as not much gets through at a given time.

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