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Colonic Inertia

Posted by matchabell @matchabell, Sep 18, 2023

Would like to hear from those diagnosed with colonic Inertia. With and without surgery, What surgeries you had, and how are you now ?
Also dyssynergia overlapping ( outlet dysfunction ). How long without surgery, and what your doing for daily management ?
Scared of any surgeries, but also fearing symptoms progressing.
Appreciate those sharing their experiences.

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ga1rose | @ga1rose | Sep 29 8:37am

Hi!
I had a total colectomy with ileostomy in 2014 at Mayo in Rochester and then later an ileostomy reversal. Prior to that I had I had Nissen fundoplication 360 in 2007 at Johns Hopkins and a revision (to a 270) in 2011. I had the first Nissen bc of my severe GERD (I couldn’t eat or drink anything - sips of water -without having it come back up and had lost a lot of weight) and I didn’t know it at the time but there was quite a bit of damage done during the surgery.
It was supposed to be performed with laparoscopic assistance but the device wasn’t working so the surgeon did it without it. I had the revision bc my wrap was ungodly tight, could barely swallow liquids, and had terrible esophageal spasms.
After that I started to gain weight but my stomach got bigger and bigger but it was rock hard. I also stared having severe constipation (I had IBS-D since high school) and it felt like my gut was heavy as a brick. The head of the GI dept at Hopkins was at a loss. I made an appt at Mayo when I was in so much pain and at times hadn’t had a bowel moment in a month.
After many weeks of testing in Rochester, I learned that I had vagus nerve damage, gastroparesis, and dead colon. I was scheduled for a total colectomy for the next month. I wasn’t supposed to have an ileostomy but it needed to be done bc how my body reacted in the surgery.

Despite having GI issues to this day, I am very happy I had the surgery. I was beyond miserable, was in constant pain, and I literally looked like a pregnant (with triplets) Mrs. Pilsbury Doughboy.

I know I wrote a lot but I didn’t want to leave anything possibly helpful out.
If you have any questions please feel free to ask away!

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gormanb | @gormanb | Oct 1 3:41pm
In reply to @hopeful33250 "Hello @gormanb and welcome to Mayo Connect. First, let me thank you for being a career..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

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?

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@hopeful33250 thank you. The role dietitians can play in healthcare is often misunderstood. I did home care in the Cleveland area. I was lucky that several doctors at the clinic got to know my work and referred their patients to me.
Likewise, I did have surgery of the upper GI tract related to dysphasia. It persists to today but is much more manageable. This current surgeon didn’t connect it to my current issue. I should hear the results from this Sitzmarker timed transit study next week. If it confirms her diagnosis of colonic inertia or not, I’m fairly positive I won’t accept her option of a total colectomy. I know surgeons typically don’t prescribe meds, but hopefully the new GI doc, who I don’t know, will have alternatives.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 2 1:17am
In reply to @gormanb "@hopeful33250 thank you. The role dietitians can play in healthcare is often misunderstood. I did home..." + (show)
Profile picture for gormanb @gormanb

@hopeful33250 thank you. The role dietitians can play in healthcare is often misunderstood. I did home care in the Cleveland area. I was lucky that several doctors at the clinic got to know my work and referred their patients to me.
Likewise, I did have surgery of the upper GI tract related to dysphasia. It persists to today but is much more manageable. This current surgeon didn’t connect it to my current issue. I should hear the results from this Sitzmarker timed transit study next week. If it confirms her diagnosis of colonic inertia or not, I’m fairly positive I won’t accept her option of a total colectomy. I know surgeons typically don’t prescribe meds, but hopefully the new GI doc, who I don’t know, will have alternatives.

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@gormanb
I appreciate the proactive approach you are taking. Being able to think through your options and to advocate for the best treatment possible is essential.

I would appreciate hearing about the results of the Sitzmarker study and the steps you plan to take next. Will you continue to post with updates?

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