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.

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

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.

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.

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.

Thank you @amandaburnett for connecting us. @thellman I am in your exact same boat and I don't know personally anyone else who has this issue.

I've had chronic constipation for decades, but 2020 and 2021 have been absolutely stunningly worse than before. In my earlier years it was written off as IBS-C. Then when I had my first (aborted) colonoscopy, the GI told me I had a "very redundant" colon. The next two GIs echoed his sentiments, and now the 4th GI is all jaded and says it's only "moderately" tortuous and that the one little blip on the screen during my anorectal manometry (after which I immediately relaxed my muscles) shows that pelvic dyssynergia is the cause of my constipation. (I view this as medical misogyny. I even paid $1500 for three PT sessions to train my anal sphincter and got an A+ but still I'm 10+ days between BMs, and even then only with stimulant lax, often coupled with a glycerin suppository or enema).

i had a colonoscopy a week and a half ago and drank the entire 4 liters of goLYTEly plus four ducolax with no bowel movements at all until the 11th hour and they almost made me reschedule (and drink two 4-gallon jugs, which I told them I would never in a million years do). This has never happened to me on colon prep. NEVER. And I don't regularly use stimulant lax, so it's not like I'm dependent.

I haven't asked for surgery, but I have asked for better imaging b/c my low back hurts and my particular type of breast cancer (for which I was treated with double mastectomy and never touched the lymph nodes, so no radiation, no chemo) loves to metastasize to the gut, so I'm more of a mind that we MUST find out if there's something binding to the colon. I do take an aromatase inhibitor that lowers my estrogen to zilch, so perhaps my muscles have atrophied.

Additionally, I have a history of pernicious anemia and high parietal cell antibodies indicative of autoimmune gastritis. Because my atrophy healed and my chronic gastritis isn't active anymore, my GI says I don't have "classic" autoimmune gastritis. Because it's a slow chronic process, and I've been treating with weekly B12 injections for 2 years.

That's way more than you wanted to know about me, but tell me more about you. How long has this been going on, and how old are you?

I've taken all the drugs except maybe amitiza. Some worked initially and then stopped. here are some things I've used that did work initially and then stopped:

fructoogliosaccharides (gas inducing but that dies down)
xyloogiosaccharides (same as above)
magnesium (tons of it, which isn't nice to kidneys, so I try not to)
an abundance of prunes and fruit juice
Bellway psyllium fiber with more water than any human cares to drink
Senna herbal tea (which I try not to use b/c it can be habit forming but we get desperate). it colored the insides of my colon (nice).

People in my autoimmune gastritis group swear by betaine Hcl under the reasoning that reduced stomach acid causes them to not digest thoroughly and the betaine Hcl helps with that and results in less constipation. I have yet to be brave enough to take more than the 2 capsules listed on the container, so I don't know if it works for me. Those who use it successfully take 3-4 with each meal.