1. < Digestive Health

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 | Nov 23, 2022
In reply to @tropicbev "Scroll down to the bottom until you see a blank screen for "Comments". Just type in..." + (show)
@tropicbev

Scroll down to the bottom until you see a blank screen for "Comments".
Just type in there.

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Thanks! Feel so dumb. I did figure it out!

REPLY
kayla1988 | @kayla1988 | Nov 23, 2022
In reply to @sallyw133 "I saw a colo-rectal surgeon on Friday. The surgeon I was scheduled to see on Dec..." + (show)
@sallyw133

I saw a colo-rectal surgeon on Friday. The surgeon I was scheduled to see on Dec 7, cancelled me for the third time and wanted to move me to Dec 28. Or I was given the option to see a colleague. It turned out to be a blessing in disguise. She had an opening two days later and I absolutely loved her!
The apt did not go at all as I
expected. She reviewed all my records, all my testing and asked a ton of questions. She also did an ahem, exam. She felt I had multiple things going on. My transit study showed slow motility from stomach through
Colon, with colon at 86 hours. Extremely slow. She feels bowel is big problem and stool is getting hung up in multiple locations. Nothing to do with tortuous colon. Everything to
do with motility. Second. Pelvic floor dysfunction. My brain is not communicating appropriate signals to PF to move stool out. Also, levator muscle pain also related to pelvic floor.
Options. Bowel Marker Test. 5 days of X-rays to determine where bowel isn’t functioning correctly. Problem. No drugs 7
days before and 5 days during me and I would be in misery. I pass. Defecating MRI would show exactly how my PF is working or not. Not too unpleasant. Pelvic Floor Therapy. Though I’ve done locally in past, not type she wants. Ileostomy. No removal of colon. Great candidate. I’m thin, no prior major abdominal surgeries, active. She could give me a great stoma in an unobtrusive location. But doesn’t think I’m to that point yet. Decide what I want to do.
I decide to have the MRI (😬), looking into having right PF therapy locally. And putting together all my questions for possible surgery at some point. It could always be reversed. She said the gi I’m seeing is the best so I’ll continue working with him on meds. Sorry so long but it was a lot of information. Hope maybe some could help some of you.

Jump to this post

Was the transit study you did called a smart pill test?
I had the other transit test where you swallow the 24 rings in a capsule and they xray you every day for 5 days. But they never told me to stop the laxatives beforehand or during 😭 and on day 5 of the xray I only had 5 markers left so they said it was normal transit. I struggle with my bowels everyday. I take Miralax nightly and Motegrity every morning.

REPLY
1 reply
sallyw133 | @sallyw133 | Nov 23, 2022
In reply to @kayla1988 "Was the transit study you did called a smart pill test? I had the other transit..." + (show)
@kayla1988

Was the transit study you did called a smart pill test?
I had the other transit test where you swallow the 24 rings in a capsule and they xray you every day for 5 days. But they never told me to stop the laxatives beforehand or during 😭 and on day 5 of the xray I only had 5 markers left so they said it was normal transit. I struggle with my bowels everyday. I take Miralax nightly and Motegrity every morning.

Jump to this post

Yes. It was a smart pill study. She just told me about stopping the meds for a week. Then they would give me five of something. I would swallow one every
day for five days and could go to my local hospital to have the X-rays taken. Could also not take anything during those five days.

REPLY
2 replies
sallyw133 | @sallyw133 | Nov 23, 2022
In reply to @sallyw133 "Yes. It was a smart pill study. She just told me about stopping the meds for..." + (show)
@sallyw133

Yes. It was a smart pill study. She just told me about stopping the meds for a week. Then they would give me five of something. I would swallow one every
day for five days and could go to my local hospital to have the X-rays taken. Could also not take anything during those five days.

Jump to this post

She called it a bowel marker test.

REPLY
lazycatdayz | @lazycatdayz | Nov 23, 2022

I saw colorectal surgeon today and have redundant transverse and sigmoid colon. He wants me to do a Gastrografin enema to look at the sigmoid and is considering laparoscopic sigmoidectomy. Anyone been down this road yet and know what to expect with this test and possible surgery? Any input appreciated.

REPLY
lazycatdayz | @lazycatdayz | Nov 24, 2022
In reply to @sallyw133 "I saw a colo-rectal surgeon on Friday. The surgeon I was scheduled to see on Dec..." + (show)
@sallyw133

I saw a colo-rectal surgeon on Friday. The surgeon I was scheduled to see on Dec 7, cancelled me for the third time and wanted to move me to Dec 28. Or I was given the option to see a colleague. It turned out to be a blessing in disguise. She had an opening two days later and I absolutely loved her!
The apt did not go at all as I
expected. She reviewed all my records, all my testing and asked a ton of questions. She also did an ahem, exam. She felt I had multiple things going on. My transit study showed slow motility from stomach through
Colon, with colon at 86 hours. Extremely slow. She feels bowel is big problem and stool is getting hung up in multiple locations. Nothing to do with tortuous colon. Everything to
do with motility. Second. Pelvic floor dysfunction. My brain is not communicating appropriate signals to PF to move stool out. Also, levator muscle pain also related to pelvic floor.
Options. Bowel Marker Test. 5 days of X-rays to determine where bowel isn’t functioning correctly. Problem. No drugs 7
days before and 5 days during me and I would be in misery. I pass. Defecating MRI would show exactly how my PF is working or not. Not too unpleasant. Pelvic Floor Therapy. Though I’ve done locally in past, not type she wants. Ileostomy. No removal of colon. Great candidate. I’m thin, no prior major abdominal surgeries, active. She could give me a great stoma in an unobtrusive location. But doesn’t think I’m to that point yet. Decide what I want to do.
I decide to have the MRI (😬), looking into having right PF therapy locally. And putting together all my questions for possible surgery at some point. It could always be reversed. She said the gi I’m seeing is the best so I’ll continue working with him on meds. Sorry so long but it was a lot of information. Hope maybe some could help some of you.

Jump to this post

I have redundant colon and and pelvic floor dyssynergia. Doing biofeedback with pelvic floor physical therapist is really helping. I do the exercises religiously three times a day. I hope the MR defacography gives you more information to direct the therapist. Did you also have anorectal Manometry? I haven’t had it yet, but I hear that is very important for the therapist’s knowledge. I’ve been told I don’t have a motility problem, but I know of others who do and have responded to Motegrity. Wishing you all the best

REPLY
2 replies
rita | @ritabtripp | Nov 24, 2022

I found out I had a redundant colon after a colonoscopy. I was severely constipated for 40 years. However, I changed my diet - I’m vegan and probably 90% of my diet I’d veggies and I now have normal bowel movements

REPLY
sallyw133 | @sallyw133 | Nov 24, 2022
In reply to @lazycatdayz "I have redundant colon and and pelvic floor dyssynergia. Doing biofeedback with pelvic floor physical therapist..." + (show)
@lazycatdayz

I have redundant colon and and pelvic floor dyssynergia. Doing biofeedback with pelvic floor physical therapist is really helping. I do the exercises religiously three times a day. I hope the MR defacography gives you more information to direct the therapist. Did you also have anorectal Manometry? I haven’t had it yet, but I hear that is very important for the therapist’s knowledge. I’ve been told I don’t have a motility problem, but I know of others who do and have responded to Motegrity. Wishing you all the best

Jump to this post

I have had the mamometry
Done twice with varying results. The second time, the technician commented that I must have been having therapy since my results were so much different. I hadn’t. The issue I have with all these tests is that I think they are very subjective. I am always very nervous and stressed when doing them, not to mention embarrassed and uncomfortable. Plus, it’s hard not to “second guess”. Will it be bad if I don’t “sense” something soon enough, oh I could easily have held that in a lot longer. And the whole “push, relax, squeeze, repeat”. Relax!!Honestly, I’d like to see how much they could relax with a probe up their nether regions!

REPLY
kayla1988 | @kayla1988 | Nov 24, 2022
In reply to @sallyw133 "Yes. It was a smart pill study. She just told me about stopping the meds for..." + (show)
@sallyw133

Yes. It was a smart pill study. She just told me about stopping the meds for a week. Then they would give me five of something. I would swallow one every
day for five days and could go to my local hospital to have the X-rays taken. Could also not take anything during those five days.

Jump to this post

Thank You!!

REPLY
beaglemom09 | @beaglemom09 | Nov 24, 2022

I was told at my last 2 colonoscopy's (every 5 years due to my mother passing away from colon cancer at age 44) that I have a redundant/tortuous colon along with diverticulosis. The surgeon just says it and then walks away. Never an explanation of what it means. So I go home and research. I am 60 and suffered from constipation most of my adult life but it progressively gets worse. When I went to a GI doctor in Jan 2020, he said I have a lazy bowel and prescribed Linzess. I had tried all OTC meds that would work for a short time and then stop. Linzess has been the same. It worked for about a year, 72mg, then I went up to 145mg and I still take that but have to add Miralax and or Milk of Magnesia or laxatives. I have only ever gotten diarrhea (sometimes 6 a day) but at least I'm getting something out. So recently I went to see my Gastro docs PA. I cried during the appt about how this effects my life. I am sick of waiting half the day and nothing comes out or spending half the day running to the bathroom. I asked if this is what my life will always be. The doctors have never given me a clear answer. The PA had compassion (for once) and prescribed me Lactulose 2X day and upped the Linzess to 290mg. The problem is nothing works consistently! I can't spend the rest of my life around my BM schedule! But for now, that's what I'll have to keep doing. She also sent me for a Colonic Transit Study. I started that 3 days after my appt with her so I had to stop all constipation meds for 7 days. The first day they gave me the Sitz marker pill. The next 5 days in a row I had to be at the hospital the same time each day for an x-ray. The study showed all 24 markers on day 1, 24 on day 2, 24 on day 3, 19 on day 4 and 9 on day 5. The PA wrote back to me on MyChart, after I inquired what the next step is, that I should make an appt with my colo/rectal surgeon to see what he can do. She said I need to find a motility specialist. After all of my research on here and other websites and forums, I do not have high hopes that this will ever be fixed. I have already been through a small bowel resection due to peritonitis in 2006 from a doctor nicking my bowel during a tubal ligation surgery. I've had a hysterectomy in 2016, a partial small bowel obstruction in 2018, and breast cancer in 2020. Other then that, I'm pretty healthy! Lol.
I just thought writing in here maybe someone can relate and offer a suggestion. I have not made an appt with my colorectal doctor yet. None of this is cheap either due to our high deductible insurance. We pay 100 percent until $9100 deductible is met. Yikes, that's a lot of money! I'm sure you can all relate to this also.
Anyway, thanks for reading my long post. I empathize with all of you!!

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