Anyone else have a Redundant / Tortuous Colon?

I suffer. Period. I have been suffering, and I have accepted that I will continue to suffer for the rest of my life. I take it like a champ. I am a mother of four, wife, daughter, sister, aunt, friend, and most of all, a human being with symptoms that are (constantly and continuously) ignored. Five hours ago, I walked into my home dumbfounded by one of the countless colonoscopies in the past 18 years. Tortuous colon. Really? You don’t say? I want to understand the reason patients explain their most excruciating symptoms? Why will my doctors NOT comprehend my medical history? Why has my body been responding to pain with Vasovagal attacks? My placenta embedded and grew into my kidneys, urethra, bladder, and most of all, my intestines for the seven months I carried my child (yes, unnoticed by my Ob-Gyn doctors). I survived a 12-hour surgery, two cardiac arrests, DIC, 60 units of blood and platelets, life support, and a coma. With my intestines on a table during four + hours of the 18-hour surgery. That I have surgical staples which, instead of dissolving or removing, have formed muscle and tissue? I have adhesions. Out of many colonoscopies, I have not been able to prep for JUST the last two colonoscopies? Double or single- the prep simply does not work. After sacrificing my soul to my toilet for three days, all I have to show for it is a doable “murky” colon at best and an SMH from the doctor. That even pediatric scopes many times do not fit. I have had a laparotomy and had a small portion of my intestines removed because it was twisted into a ball intertwined with muscle and ruptured. I attempted to make an appointment with Mayo Clinic to no avail. Why do I feel my voice is irrelevant? I am confident that somewhere between my ignorance and irrelevance is the answer. Again, suffering is inevitable, but I did not survive to give up at this juncture. Nor will I ever give up my search for knowledge and not necessarily a cure or “the answer,” but a little comfort and relief. Good luck to all on your journey to wellness. Raise your voices- sometimes it is ourselves that we cannot hear, and only then will the physicians LISTEN to us.

Sorry it was a team of 18 (God bless them) who worked on me, saving my life… and a 12- hour surgery I wanted to clear that mistake up.

How awful! How do you find doctors that will listen?

I wish I knew. I did discover that most doctors do not take patients and our “woes” as seriously as we take ourselves. Not necessarily as a form of cruelty more than a sense of immunity and numbness they have built and conditioned around themselves from constantly dealing with patients. Many automatically think the patient is exaggerating or even lying. Not good for the folks like me who refuse to set high expectations and barely have the faith to show a smidgen of emotion anymore.
Up to two years ago, I was never constipated. It was quite the opposite. I have had symptoms of IBS for years. I live on the toilet and called it my throne. Only now it’s with the added pain of constipation. Makes me wonder if anything could have been done. We all know now, I do not have IBS.

I’ve been searching for a diagnosis for almost three years. It seems like drs just go with IBS when nothing else is obvious. I feel right now like I am a yo-yo. Every dr I see tells me something different. Slow transit, tortuous colon, dyssyrgenia. Add fiber. Don’t add fiber. Low FODMAP. No low FODMAP. I’m ready to pull my hair out! And I just feel sicker and sicker.

Denalynn - Just hearing your description is exhausting. I hope you find some relief occasionally.

Yes I do I have had it for at least 8 years that I know of and have been having alot of changes going on in my body and I am scarred.

I feel the same way. I have been in emergency so many times...I have been to a specialist and they dont want to operate unless my colon falls out wich sounds pretty stupid and scary to me. I can't have a bowel movement myself I have to flush myself with a water enema every few days and for the last year and a half my stool has been yellow. So I know there are digestive issues. Iv been in the er many times with severe pain and they say yes you are very constipated. I am just not getting anywhere. I dont know what to do anymore.

I have been diagnosed with a tortuous colon. The specialist does not want to do surgery. My bowels do not move themselves I have to do a water enima every few days to flush myself. For the last year my stool has been orange color and turned to yellow now. I am worried that something is going on with my liver or pancreas. Does anyone else have this issue?

I’ve just seen a pelvic floor specialist/colo-rectal surgeon. Definitely have pelvic floor issues which are impacting constipation. They are bringing in a new female gi that specializes in slow transit colon. Both In new Dept only treat women. I am so excited to maybe finally find help. In meantime, Motegrity, Amitiza, Miralax, 8-10 glasses of water and tbsp of mineral oil at bedtime. Maybe look into any of these you haven’t tried. I’m with you. This whole thing sucks. Trying to juggle what to take, not take, too little, too much. I’m at my sons this weekend. Didn’t go this morning so now I’m in a panic. Afraid to take too much last night because going to zoo this morning. Can’t win.