Anyone else have a Redundant / Tortuous Colon?

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!!

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

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 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.

Hi Sally,
I'm glad that you finally found someone to give you some help and hope. I'm interested in your recipe for oat bran, applesauce and prune juice. I've seen this recipe before but was afraid to try it because of the fiber in the oat bran. My doctor(s) have told me to keep fiber to a minimum because of the redundant colon. But I'm willing to give anything a try at this point. Can you tell me the ratio of the ingredients please . Thanks, and good luck with the new PT/
Let us know how you are doing, as it is people like you who I learn from....
not the doctors.

I am awaiting hearing back from the surgical team as to what’s next in my redundant colon treatment. In the interim, I take 1 T extra virgin olive oil at night to reliably move my bowels by the early morning, along with a full bottle of water when I arise. It’s a sure flush that works great! I find that my insides are “sore” and tender, so I am gauging what to consume based on this barometer. Staying clear of high fiber foods for now. Sometimes a plain baked potato and a cool vanilla shake is about all I can do. Not the best nutritional intake, but it soothes. Am drinking diverticulitis tea and sometimes slippery elm powder as well. Peppermints also help calm the digestive tract. Staying clear of red meat and doing only chicken, turkey, fish and eggs for now. A half ripe avocado and a bit of sourdough toast is a common diet. Hope this helps someone out there.

So you mentioned pancreatic insufficiency…
Do you take the prescription enzymes? ie, zenpep or creon?
I was misdiagnosed for 30 years with IBS-D and it was a constant struggle because nothing really helped.
My condition ruled my life 😵‍💫.
Finally the 3rd gastro practice said I had a tortuous colon, diverticulitis, chronic gastritis, hiatal hernia, stomach ulcers, cachexia and IBS-D. ALL caused by exocrine pancreatic insufficiency. I now take Zenpep when I eat and it has truly changed my life for the better. My weight is now a healthy 106, (I’m only 5ft 2inches) and very fit age 67.
The ONLY foods I avoid is sucrose. That requires another prescription enzyme and I prefer to just avoid any added sugars. I consume all the fruit I desire with no issues whatsoever. If I want desserts, I just use Stevia to bake with and have no issues. I hope others that suffer from these digestive intestinal issues get tested for EPI. It’s estimated that there are MANY people misdiagnosed. It’s a genetic condition that was fairly unknown until around the year 2000.
There is HOPE! Never ever give up advocating for yourself.

I am same but also going to give a try, but maybe at a slower pace.
1 cup applesauce, 1 cup oat bran, 1/4 cup prune juice. Spices as desired. Cinnamon, nutmeg, etc. May be stored in frig or freezer (ice cube trays). Begin with two TBSB each evening followed by 6-8 ounces of water or juice. After 7-10 days increase to 3 TBSP. and then at end of second to third week increase to 4. You may have bloating and gas at beginning but should go away after few weeks. Should see improvement in bowel habits in two weeks. With us, though, who knows!!! As always, proceed with caution. I’ll probably start with one.
Thanks for your good thoughts in my journey!