Colonic Inertia and Pelvic Floor Dysfunction: Your Experiences

Just curious, how many on this site have had an ileostomy due to their colonic inertia and pelvic floor dysfunction? On the flip side, how many had a total colectomy with an IRA due to colon inertia?
How long ago was your surgery? Any post-surgical complications? Are you still having to take any motility agents or laxatives? And would you do it all over again? Ty💕

Hi there, I have an ileostomy due to colonic inertia. I started with a colostomy over five years ago due to a perforated colon. The colon did not function any better with the ostomy than before, and I was finally diagnosed correctly with colonic inertia (I had been told my whole life I was just constipated). I got my ileostomy in November of 2020, and it has worked perfectly. I haven't had to use any laxatives; in fact, the opposite is true. I have to thicken and slow down my output to avoid losing nutrients like magnesium and sodium. You don't say why you are asking, but if you have been diagnosed with colonic inertia, I would highly recommend the surgery. It has made my life so much better. I'm no longer in constant pain and discomfort and am in control of my bowels rather than them controlling me. My quality of life is so much better.

Terry

Thank you, Terry! I'm currently being worked up - I failed my Sitz marker this week - all 24 markers retained day 5 - mainly in the descending/sigmoid colon. I have EGD 6/25, gastric emptying, and anorectal manometry 8/6 & 7.

Did you have any small bowel dysmotility?

Are you not a candidate for a total colectomy and IRA?

Thank you for responding and for your willingness to share!

I remember going through the Sitz marker tests and having them tell me I was within normal range. Yeah right! There was nothing normal about my bowel movements, or lack thereof. If you are failing the Sitz tests, you must be at least as bad as I was. When my colon perforated, they gave me a colostomy as an emergency surgery. When it became clear that my colon was not working (multiple bowel obstructions), the surgeon suggested an ileostomy but left my colostomy in place and my colon intact in case they wanted to reverse it. Well, it worked beautifully, so another surgery was scheduled, and I had my colon removed, with the rectum left intact, and took down the old colostomy site. I was afraid that my ileum might also not work properly, but that has not been the case at all. It's been over four years now, and my only regret is that I didn't have it done sooner. Not that I had a choice. Because my Sitz marker tests were considered normal, they wouldn't consider me a candidate for surgery. I had to wait for my colon to perforate! My advice would be, go for it!

Terry

Thank you, Terry! EGD this week. Motility medication changed from Linzess to Amitiza; I took the first dose last night, and my goodness, it worked! I am grateful to God🙏🏻 but nervous to take it twice a day as prescribed. The doctor also wanted one cap of Miralax daily. I think I might try Amitiza once a day and just complete this workup journey.

Hope you have a good weekend!

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

Hi again,

I share some of my experience on my profile if you want to read a little there; otherwise, feel free to ask specific questions :)

Terms like constipation, colonic inertia, and dysmotility seem to connect a lot of women who were not listened to or properly diagnosed for too long.

As of this date, I don't have an answer as to what autoimmune condition attacked and essentially paralyzed the nerves in my colon. Probably global dysmotility disorder with other organs that have been symptomatic and/or removed.

I've been given the opportunity to be in a program that focuses on the brain-gut connection. Hoping that will provide more answers in the future.

I do have RA and Raynaud's; a lot of the autoimmune conditions like to gang up together.

I failed every motility medicine and was on three of the main medications at once toward the end of my colon's tenure... life was quite miserable at that point.

Sounds like your sitz marker test is confirming your colon doesn't want to work.

I have a subtotal colectomy or an abdominal colectomy, meaning the part of the colon that was in the abdominal cavity is all gone. The part of the colon I have remaining is the rectum.

And your sphincter and pelvic floor muscles have to work well. You will need them to.

To have any chance of success at an IRA, you need an adequate length of rectum.

I was in a bad accident last year that fractured my tailbone, and I'm awaiting hip surgery. There were some times early on after the accident that I felt an ileostomy would have been easier to deal with, but it seems like the IRA is still functioning like it should.

I made the decision to have the surgeries when I could because as we age, it takes our bodies longer to recover. I have a family with young children, so I make the choices that I believe will allow me to participate in the most activities possible. I do have to time eating to match the activity I want to participate in, which can be annoying at times... for instance, the day before I travel, I limit my diet to more smoothies, liquids, and low-fiber foods. But it's still so much better than when I was in so much pain with a dying then paralyzed colon.

Hi! I have colonic inertia and totally concur with your statement about a lot of women not being listened to (I have heard similar stories about men too). I don't have an autoimmune disease, but I do have a connective tissue disease - Ehlers-Danlos Hypermobility and Osteogenesis imperfecta. Both of those caused challenges growing up, but about 8 months outside of menopause, my colon peaced out - ha!

I too did all the meds, therapies, etc. I am scheduled for a TC with IRA in February. I had two consults with surgeons I found from a FB group. Both were excellent. One did not think I was an IRA candidate because of my dyssynergia. The other still thinks I am a good candidate because my rectum and anal canal function as well as everything above the colon works as it should.

I am 57, strength train, do all the things, but am taking ridiculous amounts of motility and laxatives - it's time for surgery.

I have decided to try the IRA first, and if it doesn't work, go with an end ileostomy. At 57, with hypermobility, I don't want to do a loop because the thought of living with my colon just hanging out freaks me out. I also have learned that most pass tons of mucus and it's painful. As well, they still have to irrigate it and get colonoscopies. I don't know; I don't feel like it's the right choice for me. My Stiz marker was a ringer for CI, and later I had a total gut 5-day study at Hopkins, and yeah, my colon doesn't move.