1. < Digestive Health

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

sallyw133 | @sallyw133 | Oct 12 6:02pm
In reply to @standinginfaith "Big hugs!! This is so true! And that IS OUTRAGEOUS!!! And it has almost cost me..." + (show)
@standinginfaith

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!!

Jump to this post

Sending hugs your way, as I’m having yet another bad day!

My former gi/motility specialist did my last colonoscopy nearly 3 years
ago. He told me my colon one of the worst he’d seen, resembling a “roller
coaster”. Only made sense that it would be more difficult for stool to pass
through a “crooked road” that a straight shot. So, I don’t understand why
so many drs discount this! My colonic transit time alone is 84 hrs! I have
a long, slow road!

REPLY
1 reply
standinginfaith | @standinginfaith | Oct 12 6:14pm
In reply to @sallyw133 "Sending hugs your way, as I’m having yet another bad day! My former gi/motility specialist did..." + (show)
@sallyw133

Sending hugs your way, as I’m having yet another bad day!

My former gi/motility specialist did my last colonoscopy nearly 3 years
ago. He told me my colon one of the worst he’d seen, resembling a “roller
coaster”. Only made sense that it would be more difficult for stool to pass
through a “crooked road” that a straight shot. So, I don’t understand why
so many drs discount this! My colonic transit time alone is 84 hrs! I have
a long, slow road!

Jump to this post

OH!!OH!!Oh my!! I am soo sorry!! Big hugs and lifting you up to the Lord right now!! I just can't hardly stand to hear of your suffering and then the doctors neglect to the point of abuse...they wouldn't want to live like this!! Here's a prayer I carry into all my appts.. (it has worked with the rheumatologist who is a Pentecostal like me)..Proverbs 3:4 So Thou shalt find favor and good understanding in the sight of God and man... you probably have the healing scriptures.. if not you can google them.. Isaiah 53"% By His stripes we are healed and 1Peter2:24 By His stripes we ARE healed!!! I'm going to agree with you in faith .. that you will receive your healing..(if TWO...) mine has been coming slowing.. but it's coming... and yours too dear lady!!

REPLY
researchmaven | @researchmaven | Oct 13 10:57am
In reply to @cipnsue "Thank you. I need something I can take daily. I want to try Slippery Elm and..." + (show)
@cipnsue

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.

Jump to this post

There is an optimal quantity of slippery elm to take, and that depends on the product. I likely take it in its strongest form, inner bark powder, and I make a tea. If I take too much I get mucous (as it supports the mucosa, right?); so I don't take too much. I don't have any advise to offer on the chunky slipper elm products. I didn't get bloating, etc., but I am not prone to it. I believe it helps me.

REPLY
researchmaven | @researchmaven | Oct 13 10:59am
In reply to @standinginfaith "Big hugs!! This is so true! And that IS OUTRAGEOUS!!! And it has almost cost me..." + (show)
@standinginfaith

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!!

Jump to this post

Look at Castle and Connally for GOOD DOCTORS. The site is not a racket. A doctor cannot pay to get listed and they do research the docs before listing. They make their money another way. It is a good source.

REPLY
1 reply
standinginfaith | @standinginfaith | Oct 13 4:15pm
In reply to @researchmaven "Look at Castle and Connally for GOOD DOCTORS. The site is not a racket. A doctor..." + (show)
@researchmaven

Look at Castle and Connally for GOOD DOCTORS. The site is not a racket. A doctor cannot pay to get listed and they do research the docs before listing. They make their money another way. It is a good source.

Jump to this post

Thank you soo much!! I sure will!!! God bless you!! Continued prayers for you!!

REPLY
View MoreView Less
Please sign in or register to post a reply.