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Tortuous colon. Surgery or not?

Posted by erinjoy13 @erinjoy13, Apr 2, 2023

Hi everybody! I have a tortuous colon that causes severe bloating, discomfort and constipation. FODMOP diet was not helpful. My GI has tried several different medications and the only effective one has been Motegrity, 2mg, as it actually mimics the function of the colon itself.

I’m thrilled to be having complete BMs for the first time (maybe in my life!) but am concerned that this is not a sustainable or permanent solution.

I am very active and in great health otherwise. Is anyone able to share their experience with surgeries or other treatment options for low-functioning, redundant colon with CIC??

Thank you!
Erin

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sallyw133 | @sallyw133 | Apr 15, 2023
In reply to @dianesgk "After my first visit to my gastroenterologist after my colonoscopy/endoscopy she was not concerned about the..." + (show)
@dianesgk

After my first visit to my gastroenterologist after my colonoscopy/endoscopy she was not concerned about the tortuous/redundant colon and I replied. You do not seem to be concerned, but I AM concerned. I have increased my food fiber, water and exercise. I presently am taking MiraLAX a night now adding a small amount of organic fiber which seems to be helping. I do not want to come to the place that I do not have control and want to find a more natural approach to living with this. I take to heart all your comments, because I know someday it could be me. It may be me now and I just am not acknowledging it but time will tell. She did mention bowel transit time tests.... so what was she really thinking but not saying? So if anyone has their "best" advice for things that seem to be working long term, I am all ears. In this journey together.... some days it feels like all we have is each other... not much out there that I could find by googling it.

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I have found that doctors are not concerned about tortuous colons at all. One gi told me that probably most everyone who has had years of constipation has this from all the straining. Unless you get a twist or obstruction, no worries!

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2 replies
dianesgk | @dianesgk | Apr 16, 2023

I did have a CT scan in December for some other high abdominal pain and a special MRI for biliary tracts/looking for gallstones stuck in a bile duct. Nothing on either of those to suggest anything helpful. My physician did say that our colon/intestines do not stay in the same position. They move around too.

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teeney | @teeney | Apr 16, 2023
In reply to @yintwin "Hi, Sally. I appreciate your thoughtful reply. I haven't had a pelvic floor study done --..." + (show)
@yintwin

Hi, Sally. I appreciate your thoughtful reply. I haven't had a pelvic floor study done -- did your ob-gyn do that? I've had a sitz marker study done to gauge transit .. and I have a story to go with it. My GI had me taking Mira lax and two citrucel caplets every day for more that a year when she ordered the study -- ordered because even though I have copious loose bowel movements every day, there is a trouble spot in that redundant, torturous transverse colon where some stool just lays there, so she calls it constipation. I was instructed to discontinue the miralax and citrucel for the 5 days of the study and not to take any laxatives. First day X-ray showed the sitz marker rings travel well thru small bowel; second and third days X-rays showed them bogged down in my transverse colon. By the third day I was in such miserable discomfort, bloating, grotesque distention that I cheated and ate coconut butter (a natural laxative) which prompted an enormous bowel movement. Of course the next day the X-ray showed that the markers had passed all the way through to the sigmoid colon. Because of that, my GI concluded that I have normal transit speed -- I didn't tell her about the coconut butter.
You're right, it's a huge surgery. But I completely resonate with you that we can't live our lives dictated by our colon. For me, it's the debilitating pain, which feels like stage 6 labor pains, and the specter of another 6 cm volvulus sending me to the ER. You're prudent to get a second opinion. It will give you confidence that you're doing the right thing, whatever that choice winds up being. I made a note of the two meds you mentioned. My GI gave me linzess, but it only caused me watery diarrhea.
Please post any updates if you can, and I will do the same.

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I have a redundant colon and constipation ….It’s very difficult to have bowel movements without the gambit of triphala powder ,magnesium ,slippery elm…And did you mention coconut butter…How much coconut butter to take for a bowel movement???And when to take it …Morning or evening..Thanks…

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2 replies
notmoff | @notmoff | Apr 17, 2023
In reply to @teeney "I have a redundant colon and constipation ….It’s very difficult to have bowel movements without the..." + (show)
@teeney

I have a redundant colon and constipation ….It’s very difficult to have bowel movements without the gambit of triphala powder ,magnesium ,slippery elm…And did you mention coconut butter…How much coconut butter to take for a bowel movement???And when to take it …Morning or evening..Thanks…

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Hi Teeney - I am not sure where to find more information about how to triphala powder and slippery elm in relieving constipation - perhaps not just in those with tortuous colons, something I was told I have after a colonoscopy 3 years ago.
Any information welcome.

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judithclark | @judithclark | Apr 17, 2023
In reply to @sallyw133 "I have found that doctors are not concerned about tortuous colons at all. One gi told..." + (show)
@sallyw133

I have found that doctors are not concerned about tortuous colons at all. One gi told me that probably most everyone who has had years of constipation has this from all the straining. Unless you get a twist or obstruction, no worries!

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That is true. The reason is that surgeries cause so many more issues like adhesions. I know as I have had 5 abdominal surgeries.

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yintwin | @yintwin | Apr 18, 2023
In reply to @teeney "I have a redundant colon and constipation ….It’s very difficult to have bowel movements without the..." + (show)
@teeney

I have a redundant colon and constipation ….It’s very difficult to have bowel movements without the gambit of triphala powder ,magnesium ,slippery elm…And did you mention coconut butter…How much coconut butter to take for a bowel movement???And when to take it …Morning or evening..Thanks…

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Teeny, I don't know of a protocol for coconut butter. My experience was anecdotal -- I had the coconut butter on hand, added maybe ⅛ or ¼ cup to my dinner, and it was enough to move my bowels.

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cipnsue | @cipnsue | Jul 12, 2023

I've been taking Marshmallow root to help with the constipation, and it helps but is causing gas and intestinal distress. I've been looking into Slippery Elm to see if it will work but not cause the intestinal distress. Any thoughts?

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1 reply
irr4et | @irr4et | Jul 13, 2023
In reply to @cipnsue "I've been taking Marshmallow root to help with the constipation, and it helps but is causing..." + (show)
@cipnsue

I've been taking Marshmallow root to help with the constipation, and it helps but is causing gas and intestinal distress. I've been looking into Slippery Elm to see if it will work but not cause the intestinal distress. Any thoughts?

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I make a mixture of 1/2c unsweet applesauce, 1 healing tsp Mag Citrate powder, 1 heaping tap Marshmellow Root Powder, 1 heaping tsp Slippery Elm powder and 1 level tsp licorice Root powder. Add big pinch of organic psyllium Whole Husk. Mix well. Add 1 T of it to 8 oz filtered water. Stir well. Should work in 6 to 8 hrs.

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cipnsue | @cipnsue | Jul 15, 2023

Thank you. I need something I can take daily. I want to try Slippery Elm and wondered if it caused the bloating and discomfort that Marshmallow Root causes. I'm trying to continue to find natural solutions to my 23 years of constipation from 5 surgeries, adhesions, and Redundant Colon. I am vegan and gluten free. I exercise daily. I have NO BM stimulation at all on my own.

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1 reply
standinginfaith | @standinginfaith | Oct 12 5:50pm
In reply to @sallyw133 "I have found that doctors are not concerned about tortuous colons at all. One gi told..." + (show)
@sallyw133

I have found that doctors are not concerned about tortuous colons at all. One gi told me that probably most everyone who has had years of constipation has this from all the straining. Unless you get a twist or obstruction, no worries!

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Big hugs!! This is so true! And that IS OUTRAGEOUS!!! And it has almost cost me my life several times.. as it is, I am a 70 year old childless widow..(I have Jesus!! ..not alone!! Thank God) But I have spent almost 3 years in bed suffering.. and seeing different doctors.. back and forth to ER.. finally thought I had one who cared but he just told me about it and then did EDGs and sitz marker tests and sent me to ER 3 times before saying.."there's nothing else I can do for you".. so then I went to another who I thought was really outstanding.. and for 3 months I begged for a colonoscopy, and he did one and found it and said ..(after I corralled him)..he'd refer me to someone who does the surgery all the time.. I returned to meet with his assistant who knew nothing about it and she sent me to ER and everything was ok.. but now going back next week and I'm almost in tears.. I have books of my medical records and proof and come prepared with questions.. they just throw pills at me and send me home.. I live very rural.. we have 2 ambulances here.. I got the one that had NO equipment one time .. just a "barf bag" .. couldn't even administer Zofran..I said "can I administer my own Zofran..?? and I did.. I have gone from a healthy ( but somewhat constipated all my life ) person who could work all day to a zero life.. got down to 98 lbs .. now a little over weight.. I think I may be losing my mind .. no one understands..gee whiz.I am so grateful to belong to this group.. and I wish we all didn't have to belong.. I am going to stand in faith for all of us for GOOD DOCTORS who care.. thank you for letting me "vent"..I am in tears..God bless you all and Jesus heal everyone of us!! By His stripes we are healed!!

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