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coreyzero630
@coreyzero630

Posts: 1
Joined: Jul 21, 2018

EDS/Distended Stomach/C-Diff... Any advise on what to do next?

Posted by @coreyzero630, Fri, Jul 20 9:17pm

Hi all, this is my first post so forgive me if I'm in the wrong place.

My wife was diagnosed with Ehlers Danlos in 2015 and it has been a non-stop fight to limit the multi-directional instability from her EDS. For her EDS, she has a comprehensive pain management program that includes a small amount of opioids along with RFAs and physical therapy. Prior to the diagnosis, she had crippling stomach pains but this issue was resolved after her gallbladder was removed (2014). She has had zero problems associated with her stomach until the last few months. Her stomach pain has simply been unbearable. As such we went to the ER of a hospital in Louisiana widely regarded as the best health system in the state. To make a long story brief, after 35+ days and countless tests, the attending physicians and GI consults told us, "we aren't equipped to handle your EDS so you need to find another place to go." But they were able to give themselves their own peace of mind by sending us on our way with a "best guess" diagnosis of Narcotic Bowel Syndrome, which is directly contrary to the unremarkable small bowel follow-through and gastric emptying study. This hospital, like most, treated my wife like an opioid user rather than an EDS patient with a terrible stomach condition.

After discharge and less than two days at home, her condition was rapidly deteriorating and I had no choice but to take her to another ER, this time, it was allegedly to the hospital with the best GI department in the state. They have done their own tests and have also told us, "EDS is a really tough condition, we know you're in pain but we don't know what it is." Now, they are also telling us that as soon as my wife can hold down liquids, even if she is in unbearable pain, she will be discharged tomorrow (even with a new C-Diff diagnosis).

So, I say all of this to say that I am overwhelmed with the feeling of my wife being left for dead by the health system in our state. I am waiting on a decision from Mayo to see if we can be accepted for an appointment but I am unsure how I can get my wife through the next week, day, hour, or minus after she is discharged. I am considering making the 1,000 mile trip to Rochester to go to St. Mary's ER in the hopes that my wife can get the care she needs, knowing full well that the ideal thing for me to do from the hospital's perspective would be to wait for my appointment.

I do not know what to do, should I take the chance, grab all of the records and make the 1,000 mile trip?

Thank you for taking the time to read my post.

REPLY

I would not wait, pain is an indication something is very wrong, and plan on driving her, upon discharge, to Mayo's ER. Pain is an unbearable emergency.

Peace and blessings to you both. My prayers are with you.

Bonnie

Hi @coreyzero630,

I was wondering about your wife's progress; did you manage to see someone at Mayo Clinic?

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