Anyone else have a Redundant / Tortuous Colon?

I had my first visit today with the pelvic floor therapist, on a referral from the colo-rectal surgeon. Not as bad as I imagined and came away with some information and hope. If you’ve not read any of my previous posts, I have a severely tortuous colon and slow motility. Last gi referred to a surgeon for consult for Ileostomy as meds not working and I’m so miserable. Her suggestion was to try pelvic floor therapy. So, sorry if TMI, but here, well, she determined I definitely do have a “squeeze” muscle issue. My muscles get “tired” after only 2 seconds. Something I was totally unaware of. So, reason that so much stool accumulates in my lower colon. Therapy will help to strengthen these muscles. Also recommended magnesium glycinate and a probiotic. Also a recipe for constipation, oat bran, applesauce and prune juice. I also have “homework” between weekly apts. PF exercises. All in all it was well worth the visit and she thinks she can help.

Thanks for the info on Motegrity. I just started it two days ago. Osmotic laxatives for some reason just don't work. I've tried em all. I do respond to stimulant laxative (Dulcolax) and Motegrity works on increasing peristalsis, so I'm hoping this helps.

I'm not asking for the world, just 2 to 3 real BMs a week!

I have redundant colon and and pelvic floor dyssynergia. Doing biofeedback with pelvic floor physical therapist is really helping. I do the exercises religiously three times a day. I hope the MR defacography gives you more information to direct the therapist. Did you also have anorectal Manometry? I haven’t had it yet, but I hear that is very important for the therapist’s knowledge. I’ve been told I don’t have a motility problem, but I know of others who do and have responded to Motegrity. Wishing you all the best

I was told at my last 2 colonoscopy's (every 5 years due to my mother passing away from colon cancer at age 44) that I have a redundant/tortuous colon along with diverticulosis. The surgeon just says it and then walks away. Never an explanation of what it means. So I go home and research. I am 60 and suffered from constipation most of my adult life but it progressively gets worse. When I went to a GI doctor in Jan 2020, he said I have a lazy bowel and prescribed Linzess. I had tried all OTC meds that would work for a short time and then stop. Linzess has been the same. It worked for about a year, 72mg, then I went up to 145mg and I still take that but have to add Miralax and or Milk of Magnesia or laxatives. I have only ever gotten diarrhea (sometimes 6 a day) but at least I'm getting something out. So recently I went to see my Gastro docs PA. I cried during the appt about how this effects my life. I am sick of waiting half the day and nothing comes out or spending half the day running to the bathroom. I asked if this is what my life will always be. The doctors have never given me a clear answer. The PA had compassion (for once) and prescribed me Lactulose 2X day and upped the Linzess to 290mg. The problem is nothing works consistently! I can't spend the rest of my life around my BM schedule! But for now, that's what I'll have to keep doing. She also sent me for a Colonic Transit Study. I started that 3 days after my appt with her so I had to stop all constipation meds for 7 days. The first day they gave me the Sitz marker pill. The next 5 days in a row I had to be at the hospital the same time each day for an x-ray. The study showed all 24 markers on day 1, 24 on day 2, 24 on day 3, 19 on day 4 and 9 on day 5. The PA wrote back to me on MyChart, after I inquired what the next step is, that I should make an appt with my colo/rectal surgeon to see what he can do. She said I need to find a motility specialist. After all of my research on here and other websites and forums, I do not have high hopes that this will ever be fixed. I have already been through a small bowel resection due to peritonitis in 2006 from a doctor nicking my bowel during a tubal ligation surgery. I've had a hysterectomy in 2016, a partial small bowel obstruction in 2018, and breast cancer in 2020. Other then that, I'm pretty healthy! Lol.
I just thought writing in here maybe someone can relate and offer a suggestion. I have not made an appt with my colorectal doctor yet. None of this is cheap either due to our high deductible insurance. We pay 100 percent until $9100 deductible is met. Yikes, that's a lot of money! I'm sure you can all relate to this also.
Anyway, thanks for reading my long post. I empathize with all of you!!

Yes. It was a smart pill study. She just told me about stopping the meds for a week. Then they would give me five of something. I would swallow one every
day for five days and could go to my local hospital to have the X-rays taken. Could also not take anything during those five days.

I have redundant colon and and pelvic floor dyssynergia. Doing biofeedback with pelvic floor physical therapist is really helping. I do the exercises religiously three times a day. I hope the MR defacography gives you more information to direct the therapist. Did you also have anorectal Manometry? I haven’t had it yet, but I hear that is very important for the therapist’s knowledge. I’ve been told I don’t have a motility problem, but I know of others who do and have responded to Motegrity. Wishing you all the best

I saw a colo-rectal surgeon on Friday. The surgeon I was scheduled to see on Dec 7, cancelled me for the third time and wanted to move me to Dec 28. Or I was given the option to see a colleague. It turned out to be a blessing in disguise. She had an opening two days later and I absolutely loved her!
The apt did not go at all as I
expected. She reviewed all my records, all my testing and asked a ton of questions. She also did an ahem, exam. She felt I had multiple things going on. My transit study showed slow motility from stomach through
Colon, with colon at 86 hours. Extremely slow. She feels bowel is big problem and stool is getting hung up in multiple locations. Nothing to do with tortuous colon. Everything to
do with motility. Second. Pelvic floor dysfunction. My brain is not communicating appropriate signals to PF to move stool out. Also, levator muscle pain also related to pelvic floor.
Options. Bowel Marker Test. 5 days of X-rays to determine where bowel isn’t functioning correctly. Problem. No drugs 7
days before and 5 days during me and I would be in misery. I pass. Defecating MRI would show exactly how my PF is working or not. Not too unpleasant. Pelvic Floor Therapy. Though I’ve done locally in past, not type she wants. Ileostomy. No removal of colon. Great candidate. I’m thin, no prior major abdominal surgeries, active. She could give me a great stoma in an unobtrusive location. But doesn’t think I’m to that point yet. Decide what I want to do.
I decide to have the MRI (😬), looking into having right PF therapy locally. And putting together all my questions for possible surgery at some point. It could always be reversed. She said the gi I’m seeing is the best so I’ll continue working with him on meds. Sorry so long but it was a lot of information. Hope maybe some could help some of you.