Medullary Sponge Kidney Disease and Kidney Stone Survival Tactics

So,

I joined this group because;

1) I was recently diagnosed as having Medullary Sponge Kidney Disease. Which means I frequently suffer from Medullary Nephrocalcinosis and Kidney Stones Independent of my diet, water intake or weight.

2) I am currently in th middle of a stone event. My 3rd (which shocked the doctors because I'm 36 and I guess they expected I should have passed more by now??? Idk😅) it is my 3rd 5mm stone and my 3rd blockage.

My first stone was 5mm and blocked the junction where my bladder meets my urethra.

My second was a 5mm stone in the right side blocking the ureter up by the kidney causing hydroureteronephrosis and a 2mm non obstructing stone on the right side. I had a stent placed but, due to environmental factors, it had to be removed 3 days later.

This is my 3rd stone. A 5mm stone, again blocking the ureter up by my left kidney. Renal Colic on March 24th. Sudden urinary retention/loss of the ability to pee March 31. Admitted to the hospital with sepsis and ARF/AKI. Stent placed, antibiotics.

Discharged 3 days later. Sent back to the hospital 8 days later in a wee woo due to complications. Stone had not moved AT ALL. Infection still present post antibiotics. Another round of antibiotics prescribed. Surgery was SC. Was discharged. Met with the urologist outpatient. STILL have the infection. Obviously. Because the stone hasn't moved. So back flow. Another round of antibiotics so at least it's being treated when I go in for surgery.

Surgery is Monday.

And after that, I'll have a temporary stent and I'll be able to start meds to help manage and maybe reduce the number of stones my kidneys produce. (I mentioned to the ER doctor when he told me about the congenital kidney anomaly that this was only my third and he hit me with "that you've passed")

So. I figured, I should probably make myself more familiar with some kidney stone survival techniques. Like how to poop without feeling like I'm trying to birth the stent through my urethra.

I'm also curious if anyone else is familiar with Medullary Sponge Kidney Disease. I was told that it's rare? It's a congenital kidney anomaly that affects only .005% of the population. But as someone who also has Ehlers Danlos Syndrome and the veritable Buffet of co morbidities that hang out with it, I know that could also mean it's under diagnosed. Especially if it's only caught in CT looking for something else, like it seems.

Anyways. Thanks for reading!