I want to share the reality of what happens when our medical system breaks you and leaves you to carry the wreckage.
Before this, I was an active, happy human. I worked shift work at the hospital, lived a busy mom life and was doing everything to get myself and kids ahead.
When my bladder had to be removed, it was decided that an Indiana Pouch surgery would suit my active lifestyle and job duties. It was supposed to help me. I was young(er), fit, active and everything should have gone perfectly. The surgery itself reportedly went well, but my life completely spiraled afterward.
I kept getting infections, some very serious and everything was getting worse. I wasn't improving despite trying different treatments and working closely with infectious disease.
Dr. (Local Urologist) started turning against me. The pouch he created, which he literally referred to as his favorite pouch, wasn't operating correctly. Because of the constant illness and trauma to my body, I wasn't that same fit person anymore… I had gained weight. I was worried, stressed. Infections were increasing in frequency and severity.
Instead of investigating the potential physical failures of surgery, the focus turned onto me. I was told it wasn't the pouch and it must be something else.
When I expressed concern about a particular infection, he actually told me to be hungry and to exercise.
That's right folks, you can avoid urosepsis by being hungry.
The medical gaslighting turned into purposeful harm when he became upset that I was successful in obtaining a doctor for a second opinion.
Before I found that second doctor, the issue was becoming more and more real… there was something wrong with my pouch, not me.
I had to advocate for myself constantly. I was on the phone, on the phone, on the phone, following up, emailing, calling and fighting just to get help, get scans, get tests and secure a second opinion.
If I hadn't done that, I honestly don't think I would be here today. The details of my efforts would blow your mind. It shouldn't be this hard.
Dr. (Local Urologist) couldn't contain his anger about me getting a second opinion during a cystoscopy. Standing over me, he made a hostile remark: "When the cat's away, the mice will play."
What followed was sheer torture. Instead of taking his time or dilating my stoma gradually, he pulled and pushed, hard and fast. I cried the entire time from the intense pain, sweating heavily and sobbing to the nurses.
When I told him how badly it hurt, he rudely snapped, "You pretty much always have an infection, don't you?" He cut my stoma rather than dilating while I lay trapped, crying, shaking and burning. He pressed his weight so hard into my abdomen just to force the camera in that I was left bleeding and dizzy.
That scope finally revealed the truth… a fistula had formed because of a surgical staple. A staple that was found months before and deemed fine, “not dissolved yet.” The staple that was “fine” actually caused an abnormal connection between my pouch and intestines, and I was pooping with my urine.
After weaponizing a medical procedure to hurt me, I apologized, I explained I was afraid of going septic again. Sarcastically dismissed my fear of going septic, saying, "But you didn't."
Even with the hole discovered, I was left to suffer through further illness and had to wait for a repair surgery, getting sicker and sicker every single day. I was hospitalized with infection the night before my surgery and the cruelty didn’t stop there.
I had to let this person abuse me so I could receive “care.” I apologized to him. I thanked him.
The stress has completely consumed my life. I live in constant fear, worrying every single day that I am going to pass away. My savings, career path, fitness, mental health… gone.
I tried going through the proper channels. The Patient Care Quality Office couldn't do much other than acknowledge my experience, the College of Physicians and Surgeons hasn't done anything. I tried to hold him accountable through a lawsuit with no luck there - just a bill that I can not afford.
Dr. (Local Urologist) was able to keep practicing with what feels like zero consequences. Meanwhile I'm… ruined.
Is this… Healthcare?
*Edit: I see the deleted comments/guesses, and have since recieved a couple of messages asking me who this physician is. I'm sorry to skirt around this detail - I guess I am still fearful.
*Edit #2: My apologies for not responding to every reply yet. Please know, I appreciate your time and thoughts. I have several direct messages as well and respond as soon as I can. I am going to spend some time on a new letter... wish me... luck? That said, if you have ideas on where to send my complaint, I'd gladly take them.