Anyone else have a Redundant / Tortuous Colon?

@jlstjohn , interesting info. I read your earlier post about the wand and almost bought one. I decided to try focusing without it. So far, it’s going pretty well. I have learned that I must go to the toilet and try to go, regardless of whether I feel the urge. Most of the time I do. I can see why the wand would assist, though and if I have difficulty again, I’ll likely try one.

@electracat yes, it was quite the experience, for a mid 40s lady who had never had any kind of surgery to have emergency surgery and a subsequent 2 week hospital stay. I was on TPN for 1 month, but have not required it since. The pelvic wand helps my pelvic floor muscles relax...so when that feeling of things not wanting to come out, they CAN now. For the rapid gastric emptying, I recently switched from Motegrity back to Linzess. I was under the impression that Motegrity worked exclusively in the small and large intestines to propel things along, but my GI doctor said it stimulates everything, including the stomach, which obviously is not ideal for someone with rapid gasttic emptying. So far I am not convinced, but will give it more time. I also am on a low dose of cholestyramine for bile acid diarrhea, which is helping reduce the frequency and improve the consistency of my BMs. Hope that helps some.

I, too, have a tortuous colon with chronic idiopathic constipation. About 3 years ago, I started taking Vibrant capsules which create peristalsis. It works pretty well most of the time. Check it out: https://vibrantgastro.com
My gastroenterologist told me I could eat anything. Because I was recently diagnosed with Parkinson’s, I am super careful to eat a healthy diet and get lots of exercise. My GI is also trying to get approval from Medicare for a drug called procalopride, which is helpful for people with chronic constipation as well as PD.
Good luck!

@ina9 My therapist recommended purchasing the pelvic wand through a company called Intimate Rose. Their website is great and they have many You Tube videos to help you get started. Basically it is an s-shaped device with a skinnier end for rectal insertion (the end that I use exclusively) and a thicker end for vaginal use. There is definitely a learning curve, but it did not take me long to become comfortable with using it. Very important is to use a water-based lubricant with it. This company has their own that they promote, which I have tried, but I prefer KY jelly. PS, my name is not John, my last name is St. John. I am actually a female 🙂. All the best!

@jlstjohn
Hi John, I would like to know more about the pelvic wand. I have a similar case as you but without sugery. I have Dissinergic defecation, a Rectocelle and pelvic dysfunction
Every day I fo self disimpaction 🙁 No surgeries.

I have battled constipation all my life..remember my mother chasing me around with he enema bottle (I'm 71 and was bout 3 so it made quite and impression!!) It didn't really bother me..I just lived with it..and some Miralax until.. Dec19 2019 when I took a Levaquin 500mg (usually took 250) and it blew a hemorrhage in my stomach..sucralafate and God healed that by May!! But then..IDK but all "hell" broke lose.. leaky gut, gallbaldder out, pancreas elastase "pig pills (I took 5 an knew they would kill me) so I asked retest..and it came back ok..ER trips.. constipated so bad one time i was on the floor and couldn't get anything out up or anyway.. except sweat.. lsot most of my fluids b/p 60/40.. ambulance driver was frantic.. took 10 ,in to start and IV..(no fluids in my body) and I tock to bottles going to the hospital 45 min away.. colitis.. tested for all kinds of stuff.. and here it is.. after about 25 ER trips in 3 years 2 near death experiences and 3-4 hospital stays.. I prayed.. and on Oct 15th GOD turned on the bowels.. He got help from Trulance..(tired Linzess and Amtesia.. didn't work for me).. ..and I Miralax almost every night and take VSL3 Probiotics.. 2 vanilla plant based ensures a day.. (I was taking 6 tylenols a day for years.. bad girl!! so my liver AST and ALT were in the 80s now normal.. I went to a surgeon )Oct 30th and he said ..you do have a tortuous colon but what ever you are doing is working.. so I said the word works.. have been healed of scurvy..(got so malnourished I got scurvy and started eating potato peelings saved a toohe ) .. had a CT with a left epherical profusion.. I said re CT that.. gone!! Now God and I are working on Scleroderma and kidney stones.. but I am standing on HIs stripes.. people don't understand when you have this kind of illness..I think that is the hardest part, hurts the most.. but Jesus is there for us.. I p[ray for every one on here..that we be healed in Jesus mighty name!! He died for ust to have it .. satan wants to steal, kill and destroy.. but GOD wants us to have life and have it more abundantly.. while I'm writing this..I'm cringing in pain from the kidney business.. but if it helps anyone.. I pray so..so many of you all are have so much worse problems than I have and it breaks my heart..(I spend most of my days in bed.. I had not planned this for m retirement.. but I am so grateful not to be in the hospital.. this is a great forum.. we are so blessed to have each other..God bless you all!!

@jlstjohn Thank you for sharing that! Wow, just read about the reason for your resectioning--that is wild. I'm glad you're 'ok' now, but yeah, sorry about the other issues. I will definitely see a PF therapist soon, and I'd be curious to see what they say! And, I wonder if i have the (rather) rapid gastric emptying, too. It certainly seems like it, or maybe my body is producing a normal amount of poop and i'm just not used to it wanting to...come out, so soon! Either way, it's very uncomfortable and takes away quality of life. Does anything help with those two issues, for you (pelvic wand! I'll have to look that up!!!)--best to you! J

After reading through your experiences @electracat, I see a lot of similarities to my issues. I had about 5 ft. of my terminal ileum removed almost 5 years ago due to a cecal volvulous, and now am considered to have short bowel syndrome. Once my small intestines adapted to less length and surface area (which they do...amazing), my issues with constipation that I had prior to the volvulous returned. I HAVE had the motility studies done (Sitz markers, gastric emptying, colonoscopy, various defecation studies) . While I also have a tortuous colon, it seems that 2 other factors are contributing to my bowel issues. One is pelvic floor dysfunction. My muscles down there contract instead of relax when it's time for a BM. I have been through pelvic floor PT twice, and the best tool I have right now is a pelvic wand. I cannot live without it! Second, I have borderline rapid gastric emptying, which is probably why I, like you, see a lot of undigested food particles in my stool, sometimes as aoon as 2 hours after a meal. I hope this is helpful as I didn't see anyone else mention these two topics.

@anniewee Thank you so much. Helps to know we’re not alone! This crazy life. More soon….xx

@electracat Hi…I take the 1 dose of MiraLAX around 11 am with my last coffee of the day…it doesn’t bother me during the day like having to have a bm . As far as being bloated and gassy…that is me no matter what I drink or eat. The Senna-S is helpful as well. ( the extra -S means it also has stool softener. Sometimes I drink a Smooth Move tea….if you decide to try the tea…don’t take the Senna-S that day (only 1 type of Senna a day).
I found out about having a tortuous colon after my second colonoscopy…..I’ve had constipation problems my whole life and never had any idea my colon was extra long and twisty.
I am with you in your experiences….it is something I have to deal with daily as well.
I have not had any motility tests done. I am trying to work out things on my own. This Connect group is good because there are not many people we can talk to about our personal body-function problems.
Linzess did zero for me at the lower doses and it’s not any cure for me now either….but I feel better mentally taking it! Oh, well.
Keep in touch any time you wish.
You are not alone in your experiences…I am here too!