Colonic Inertia

i have colonic inertia which increased dramatically over thr last 2 years. My GI doctor has dismissed me after a year of trying different meds. I did have another GI doctor, who didn't understand colonic inertia. I am dependent on Smooth Move Tea, Linzess, Magnesium capsules, Colace with Senna and sometimes add MOM. I can't tolerate Miralax because it makes the bloating worse. I did have a surgery consult and told total colectomy with ileostomy. His receptionist was extremely rude which was actually good because it made me read more about this condition. I am a retired RN. I don't feel confident about surgery in FL Tampa General, Mayo Clinic in Jacksonville and UF all rank in the 30's in the US. Mayo Clinic is # 1 so that is my plan for now. i have had Pelvic Floor Therapy for over 3 years with 3 different providers.
was far. i have fought off surgery for several years, hoping some new treatments would become available. I am stressed out over this potential surgery..... !

Never had any type of gastrointestinal issues. Symptoms started slowly nearly three years ago. Today completely dependent on large water enema every few days. Loss sensation to go and peristalsis. Tried all medications, don’t work and horrible side effects. Every test shows colon not functioning. I recently found that my Microbiome is off the charts with Sibo, H. Polori and a crazy parasite. I’m on a strict elemental diet day 6. To date only option given is a total Colectomy. I’m so afraid especially not passing Manometry test three times ! I’m Still trying to get to the root cause. Pain, bloating fatigue, and this overwhelming unwell state has taken its toll and sucked any quality of life away… Can anyone share their diagnosis experience of colonic inertia ? Very much appreciated.

I have chronic constipation symptoms, but have not been diagnosed. I am scheduled for second colonoscopy next month. I found this piece interesting. It seems I might need different tests and not a regular colonoscopy. I hope you get some good responses.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348730/.
Here’s another piece:
https://iffgd.org/wp-content/uploads/159-Constipation-Colonic-Inertia-and-Colonic-Marker-Studies-1.pdf

Has it continued to work? I find that treatments often work for a little bit but then stop.

Yes, it has continued to work as long as I use it with the Miralax. Alone, it did not work for me. Not perfect, but leaps and bounds better than where I was a year ago which was on the verge of a colectomy. I have to juggle the Miralax as sometimes it works a little too much, but for the most part, it's all going pretty well.

That's so great to hear. Do you mind me asking what your dosing is? Did any other drugs work for you? I thought I had tried just about everything, but I hadn't heard of this yet. The only treatment being recommended to me right now is a colectomy, but I'm not ready to take that leap yet. I'm only 40. I'm scheduled to go to Mayo Clinic in May and am hoping they have some other ideas...

Thank you for sharing this update! Happy to hear you have found some relief. I would also like to hear your regimen with Mestinon and Miralax.

I take 60 mg of Mestinon 3 times a day and usually 1/2 cap of Miralax every morning in my coffee. If I need to, I increase or decrease Miralax or take a little Calm Mag powder at night.

I just received a tentative diagnosis of colonic inertia 3 days ago. I will be completing a 3 day transit time test to confirm it. I have lived with chronic severe constipation for my entire life, 76 yo. I have seen countless doctors who were never able to give me a diagnosis or treatment options other than more fluid, more fiber, etc. I’m a retired dietitian and think I had a pretty good handle on those. My emotions are all over the place. It’s extremely satisfying to finally have a diagnosis for a life long condition but also terrifyingly as I’ve only been presented with one option, a colectomy. I know I’m at the beginning of a long journey and appreciate the chance to learn from all of you.

Hello @gormanb and welcome to Mayo Connect. First, let me thank you for being a career dietitian. In my humble opinion, dietitians are part of the unsung heroes of the medical profession. I have had three surgeries of the upper digestive tract, and my meetings with registered hospital dietitians have been more helpful to me than any others on my medical team when it comes to eating plans after surgeries. I deal with what my GI doctor refers to as slow transit constipation, which is also very frustrating, so I understand a little about what you are experiencing.

I'm also glad that you finally have a diagnosis for a long-term problem that has eluded your medical team in the past. I understand that it is good to have a label to put on these troublesome health issues.

I found some information about this on the University of North Carolina website. Here is a link, https://www.uncrexcolorectalsurgery.com/colorectal-condition-information-raleigh/benign-colorectal-disease/colonic-inertia/

You do not mention in your post about ever having any surgery of the upper or lower digestive tract. Is my understanding correct?

We have numerous discussion groups on Connect that deal with constipation and other motility disorders. You might find them helpful. These discussions can be found by using the search bar at the top of your screen and typing in words like "constipation" or "motility disorders," and this will bring up a list of all of the posts that mention these words. You will likely find many helpful suggestions in these posts.

What other discomfort do you experience (beyond constipation) that is problematic for you?