u/yoshdee

While I’m in the hospital for the 259462 time this year I got to thinking. How much we aren’t taking seriously, the rude comments or comments that blow us off, and just straight up ignoring.

When I first go GP It was mild. But got progressively worse over the years. This was also in part because of colonic intertia and severe pelvic floor dysfunction. This caused me to lose weight over 4 more from 165 to 95 pounds (I’m 5”7).

Anywho, here’s my list of insanity.

1-I went to the ER once from debilitating pain and nausea. The doc told me to go home and read a gratitude journal and practice meditation. I was deflated and didn’t speak of myself back then so I left.

-went to another hospital the next day as it got worse and I had pancreatitis.

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2-I had multiple GIs tell me they didn’t know what was wrong with me and basically left it at that.

-finally for one that referred me to a surgeon, he ran more tests and that’s when we discounted colonic inertia. I would go weeks without pooping no matter what we did. Kept vomiting, kept losing. Did a MRI entography and it showed even when poop was close, pelvic floor spintcer wouldn’t relax and would hurt like hell when it finally did pass.

-At least after a year I found a good team.

-I got an ileostomy which helped with the constipation but not pelvic floor or the GP.

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3-the weight loss comments. And oh boy did I get a ton. Good and bad.

-I once called to make a MR appointment, the lady on the phone said I was lucky I was so skinny (95 pounds) and I told her no she doesn’t, it’s cause I’m sick, hence the MRI. She said straight up “well I wish I had what you have, I need to lose some weight. Sigh.

-my mom told me 60 pounds wasn’t much, I could stand to lose it.

-my obese primary told me when I was 130 that I needed to lose weight.

-countless other said I looked great ( I was gaunt, bones protruding, great skin…

-but my sister and a few people told me I looked great sick and frail. Thanks?

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4. anyways, I had more multiple surgeries but that was ileostomy related so I want go into details.

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5-I move across the country and have to start all over again finding a team.

-took 2 surgeons and about 4 GIs before I found a good team. So FINALLY I meet with a motility specialist next month to get the GPOEM or Botox. I reallly hope this is it. They’re also gonna talk supplemental nutrition because they usually make me do bowel rest and NPO which I can’t do at home since I don’t have the necessary thing. Hence coming to the hospital for a few days every couple weeks flor fluids and IV meds.

My takeaway is this. ALWAYS ADVOCATE FOR YOURSELF.

Fingers crossed this works! Sorry for the formatting, I’m on my ohone.

Thanks for reading if you made it this far!