Because I cannot stand to be full of negativity and I would be remiss in sharing the positive experiences I have had with doctors, I wanted to write a post detailing a recent/past ER visit in which I received proper care and what I do to make doctors, especially those dealing with the chronically ill, feel appreciated and valued.
I recently learned that I have a condition called gastroptosis where my stomach has dropped into my pelvis. As you can imagine, it is clearly not supposed to be there. This is likely why I have been experiencing the gastric and instestinal blockages that I have been so loudly advocating for myself for, and, my stoma has started to prolapse once again as it did when pregnant, which means - yes, my guts are out. I don't think I've divulged this information out to too many. It's not an attractive piece of intel to share.
After almost two weeks of being unable to eat and not having a doctor listen to me, I was at home with my parents caring for me as my husband was out of town. I went to bed on the bedroom floor around 6PM as I was feeling particularly unwell and woke at 11PM in some of the most extreme pain of my life. I physically could not move. After trying to call my parent's name with no result, I managed to crawl to their bedroom and knock on their door, as this was all I could muster. I told them I needed to go to the emergency room - so you know it was bad. They called my husband to see if this was a good plan - we had a 50/50 shot - either I would be dismissed again, or I could get some version of care. I was ready for the risk. Anything to put me out of my misery. We called my colorectal surgeon's on-call line first, and once I described what was going on, including my protruding guts, who advised I needed to go in, and that was all it took.
The ER, was, thankfully, empty. I was taken back to a room quickly by a kind nurse who appeared to take my concerns seriously. I told her my history and that I had just been to two ERs before this visit and quickly dismissed, but I was desperate for care and in even more pain for care - this had gone on far too long. She called in the doctor, and I could not have been more thankful for who entered the room. His name was Marty, and he was the doctor who treated me for an intestinal blockage almost a year ago to the day back in 2020. As soon as he walked in he said "I remember you.... you have a bag. You had a blockage in here about a year ago." I could have started crying delusional happy tears in that moment. "Yes, yes you did." I responded. "You are one of the few ER doctors that's ever taken me seriously and you were phenomenal last year." "Well," he said, "I'm not going to beat around the bush - you know your body better than I do - tell me what's going on and what you need."
What? I'm being asked what I need? What to do? I remembered him being amazing, but I didn't quite remember this.
I rounded off the list of medications I typically use for an intestinal blockage and requested (yes, requested) an NG tube due to the fact that I can't physically throw up. Anyone who requests an NG tube is obviously in pain and hella nauseous. He responded that he'd have those medications in as soon as possible and that "I'll get that NG tube up as soon as you can down a contrast for a CT scan to see how bad this blockage is. Looks like you had a blockage on your last CT from your last ER visit but those CTs aren't going to work well for you - we need to see the extent of it. If you can't down all the contrast in your condition, that's completely fine. Let's just see what you can do. As soon as it's done I promise you that you can have that NG tube."
Me and my mom were shocked. We both thanked him, admittedly through pain and with tears, for listening to me, after two weeks of being put through hell and suffering on deaf ears.
"Listen, you deal with this condition every single day. You know your body better than I do. If you tell me this is what you need, this is what I'm going to do."
If I wasn't drowning in medical debt I would buy that man a damn yacht.
I remembered him being the exact same way a year ago. The nurses continued to be phenomenal, show me care, deliver my pain medication when I needed it, send my nausea meds when that got progressively worse, and install that wretched NG tube with the utmost care.
When I had that experience with him in his team in the past, I called the hospital administrator and made sure I remembered his name as well as the nurses assigned to his staff that I interacted with so I could compliment them based on how they dealt with an ER patient and someone with a severe illness. I do this every single time I have a positive ER experience. These healthcare workers that fight for and are the voices for people like me need to know they are heard and appreciated. While I have spoken that burnout is not an excuse, it affects many, and those it has not corrupted need to know that their work means the world to those of us like me.
It didn't stop there - the nurses who took care of me during my 6 day stay made sure to check in on me with the exception of one (I won't go there, but let's just say it was bad, and the positive experiences I had with the others far outweigh her negativity), deliver my medicines in a timely manner, made sure I felt cared for, and took my condition with the utmost seriousness. I felt left in the best of hands. The PA for my colorectal surgeon was phenomenal and got to know me and my extensive, encyclopedia of a history, wanting to know what to do what's best for me right now and in the future, and I couldn't be more thankful she is part of Dr. Carr's outstanding staff.
I have sent cards to my doctors, surgeons, and front desk medical staff. I even deliver donuts and cookies to their offices. I make sure to always complete positive marks on the surveys they send out.
These are small things, but these are ways to make sure they know they're appreciated and the work they do is valued more than they could possibly realize.
I would not be able to function without the help of my all-knowing, compassionate primary care doctor, who has always gone above and beyond, my colorectal surgeon, and my urology office. These people keep me standing every day, and for that I am beyond thankful.
So for this, I wanted to share. Let the people who make a difference in your life know. Whether it's big or small, let them know they are valued. It's important to let them know how much you appreciate the work that they do for you as they fight for your beautifully broken body.
Hoping for the most active and healthiest life with your stoma
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