Colonic Inertia

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!

@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.

@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?

@matchabell
I have colonic inertia. I was diagnosed 6 months ago. I have had chronic constipation my whole life but was managing. Now my colon is at the stage where it doesn't respond to medication except bowel prep. Which I have and can use when I need to. However it does dehydrate you and its not pleasant. The hospital are visiting today to show me how to use an irrigation machine. Not sure it will work very well. I am very tired have a lot of inflammation in my body, have blood pressure spikes and my filtration rate on my kidneys has dropped. I tend to think this is all attached to the same issue. I am going back to my surgeon soon and am having surgery. Not sure if I will be eligible for the surgery where the small bowel is attached to rectum or whether I will be having an illectomy. I totally sympathize with you all it is a very difficult condition to manage and the decision to have surgery was to have more quality of life. I wish you all the best.