Seeking Treatment for Severe Gastroparesis/Colon Inertia
I am desperately seeking GI specialists who deal with gastroparesis, functional dyspepsia, motility, and colonic inertia. Both the diagnosis and cause are unknown. I'm also looking for alternative therapies to address this problem, such as vagal nerve stimulation, acupuncture, and anything else that might relieve the symptoms of this condition: nausea, pain, and total inability to vacate. We've done an endoscopy, colonoscopy, and CT scan, none of which showed anything. Thank you so much.
Jan 17, 2025
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Dr Sergio Azzolino in SF does great functional medicine for these kinds of symptoms. Good luck!
I'm in a similar situation. Have had all the same tests, none of which showed anything. Have also seen three different Kaiser GI specialists all of whom had no ideas. Everyone just ends up giving you a generic "IBS" diagnosis which just means "something is happening but we don't know what it is." I ended up paying $900 out of pocket (yes, that's right, $900) for a 30 minute virtual appointment with a GI specialist at Stanford's motility clinic. She also had nothing more to offer than a "slow motility" diagnosis, the usual over-the-counter constipation suggestions, and the depressing news that this sort of thing often never gets better.
The thing that has actually been the most help to me is the constipation advice reddit pages. Every possible idea you could try, both western and alternative, can be found here. I suggest this as a good starting place: https://www.reddit.com/r/ConstipationAdvice/comments/inylod/step_1_lets_identify_your_issue_start_here/
My answers is dated (~8 years ago) since my gastroparesis symptoms improved over the years and with significant diet changes (cut out sugar and did keto, and now still doing high protein/low sugar diet), but I figure I'd contribute in case it's helpful.
Locally the GI doctors I saw checked gut bacteria and did the endoscopy and colonoscopy with no luck. Just knew from the gastric emptying test that I had gastroparesis with unknown cause and uncertain what to do to not feel so awful. Out of desperation and because it was covered by my insurance at the time, I booked an appointment at the Mayo clinic in Minnesota. An acquaintance recommended it as she had a daughter who had debilitating GI problems that weren't being resolved with doctors locally, and the doctors at Mayo ended up identifying the cause and fixed the problem (was a surgery in a very specific part between the stomach/small intestine, don't fully remember the details). I didn't have that same experience unfortunately, but I did like how thorough they were in checking what they could, and knowing the daughter's experience if there is some obscure cause contributing to someone's particular case they may be able to identify and address it.
Another route to consider is seeing a functional medicine doctor to help improve symptoms. I've seen Dr. Onna Lo (https://onnalomd.com, she's in Albany, but can do telehealth appointments) for other health questions recently and I know she frequently works with patients who have GI issues. Someone like her may be able to do a broader exam and have different supplemental/dietary/etc recommendations that might improve symptoms.
I also followed Crystal Saltrelli (https://www.livingwellwithgastroparesis.com) who has gastroparesis and created a wealth of content over the years for how to navigate living with the condition.
I hope others can chime in with more recommendations and I wish you good luck in getting better. It was a truly awful few years feeling sick everyday and hope you can find ways to feel better.
Biofeedback for this specific problem. Ask your gastroenterologist. Kids can do it as well as adults.