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

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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.

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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
Kookai | @kookai | Dec 6 6:57am
In reply to @shelly6211 "Hi Erin. I wish someone advised me years ago to avoid surgery whenever possible. I would..." + (show)
@shelly6211

Hi Erin. I wish someone advised me years ago to avoid surgery whenever possible. I would have lived with my fibroid tumors. I went in for a hysterectomy which usually is no problem so I thought. One week later had to have emergency bowel resection from being nicked during hysterectomy Now I am facing lifelong repercussions from scar tissue caused by surgery. Had to have 2 small bowel resections and many painful obstructions which can’t even describe. Adhesions are something I had to learn about after surgery. Try everything else possible!!!

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I'd venture to say your problem was caused by the nicked during hysterectomy. I have tortuous sigmoid which causes difficulty when a surgeon performs colonoscopy but luckily for me, she's a wonderful surgeon & manages to get through. Don't sit & suffer...get things done!

REPLY
Kookai | @kookai | Dec 6 7:02am

I too have a tortuous colon. The pain I experience seems a lot like diverticulitis, which I have experienced a few times. My surgeon thinks the symptoms I report are atypical of diverticulitis, but she accepts that I certainly did have a bout of it just a few months back. The pain I experience comes just prior to finishing breakfast. I'm guessing the sigmoid is pushing the stools through the colon...& that's what is causing the pain. Once the bowel movement takes place, no more pain. I do not suffer diarrhea, or constipation, nor do I suffer rectal bleeding. Lucky me! I will not go months on end suffering though...I'm at wit's end with it all, & very likely will push for some sort of surgery after a while. I detest taking pharmaceuticals of any kind however; I do believe they can help...to an extent. I just want to live my life as happy as I can.

REPLY
shawnkthryn | @shawnkthryn | Dec 9 8:48pm

@standinginfaith hello dear heart, I'm just looking for answers too & I know you know the One who has all the answers. I said awe, c'mon Lord you put everything in their. We are uniquely & intricately made. Please, just but everything back, You know where it's supposed to go.
I'm Shawn & I have a long, redundant torturous colon too. I could not have another dinner date to expect pain & stomach to pelvic distensions. How are you? & I wanna know what your eating? I'm eating carrots, sweet potatoes, squash, beets. Hardly nuthin, but I learned last night I can't eat spinach & that was in w foods listed. My intestines tell me. They dictate my life. I also take vitamins. Drink 30g protein drinks all day. I've found that & activity, even going up & down stairs, has helped me w the slow, slow go. I'm regular officially today after depleting so much food. Told my grandson today, not living on much, I'm grateful I can eat & peep own food! But, if I get sick, game over. I will not be able to maintain hydration. Drinking gatorade zero all day too. I'm at 85#'s I feel better than when I was 80#'s. Too light for this 66yy kid

REPLY
1 reply
standinginfaith | @standinginfaith | Dec 9 11:53pm
In reply to @shawnkthryn "@standinginfaith hello dear heart, I'm just looking for answers too & I know you know the..." + (show)
@shawnkthryn

@standinginfaith hello dear heart, I'm just looking for answers too & I know you know the One who has all the answers. I said awe, c'mon Lord you put everything in their. We are uniquely & intricately made. Please, just but everything back, You know where it's supposed to go.
I'm Shawn & I have a long, redundant torturous colon too. I could not have another dinner date to expect pain & stomach to pelvic distensions. How are you? & I wanna know what your eating? I'm eating carrots, sweet potatoes, squash, beets. Hardly nuthin, but I learned last night I can't eat spinach & that was in w foods listed. My intestines tell me. They dictate my life. I also take vitamins. Drink 30g protein drinks all day. I've found that & activity, even going up & down stairs, has helped me w the slow, slow go. I'm regular officially today after depleting so much food. Told my grandson today, not living on much, I'm grateful I can eat & peep own food! But, if I get sick, game over. I will not be able to maintain hydration. Drinking gatorade zero all day too. I'm at 85#'s I feel better than when I was 80#'s. Too light for this 66yy kid

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Hello to you dear heart!!! Oh I wish I had all the answers.. but I do know the one who does!! And I know you do too!! Praise HIM!! Weel Shawn.. I've been doing this for almost 5 years now.. after an antibiotic blew a hemorrhage in my stomach.. but have battled constipation all my life.. so anyway.. I have gone thru several phases of eating.. I have to laugh.. it changes as my symptoms change.. but.. I have been to a nutritionist (for leaky gut..6 months of that).. and had my gall bladder out.. ohh.. 16 trips to ER one year.. however..the very worst was using the ducloax.. but Jesus "turned the you know what on"!!! just in time.. so here's what I do.. I take Trulance..in the morning.. eat applesauce..I also try to drink 2 vanilla plant based Ensures a day.. you can get them on Amazon.. they have really helped with my vitamin and mineral levels.. and I drink Kinderlyte..8 oz glass a day.. it does not have sucralose.. oh sucralose will kill your good gut bacteria... and it hides in everything .. even English muffins!! I have trouble staying hydrated and Kinderlyte really helps (childrens section).. I also eat one Thomas multigrain English muffin for fiber a day.. with plant butter.. lately I've stretched myself out and begun eating Marie Calendars microwave Swedish meat ball dinners.. and Bob Evans mashed potatoes...and Miralax.. and alot of antinausea meds for pyloric stenosis...I have alot of health issues.. but Jesus has them all covered.. just waiting on complete manifestation!! I am delighted to hear you are regular!! Regular is the best way to be!! Praise the Lord!! My intestines dictate my life too..I'm 70 .. and not much of a life ...did you say you weigh 85..?? I got down to 98 to 104 for about 3 years and then.. I have ballooned up to 154.. too fat now..lol!! I never thought that would happen.. but I'm working on that too.. I think that the sweet potatoes are excellent (and wish I could stand them..ugh!!ohhh!!) ..they are very good for you!! And I think you are a winner!! You keep on keeping on and loving on that grandson!! I'm gonna pray for you and stand with you in faith.. for by His stripes we are healed!!!

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