My sister has Crohn's disease.
It's one of the defining statements of my life. It is one of the reasons I am who I am, and why I do what I do. My sister has been sick since we were teenagers. I mean really, truly and deathly ill. My earliest memories of her illness include her standing next to my locker looking as pale as a ghost. They thought she had lymphoma, cancer. Turns out she had Crohn's.
It became clear to me during high school that my family needed an ambassador, a translator of medical jargon, someone who knew all the options and had the patient's best interest at heart. School came very easy to me, I have a photographic memory. I was the natural choice. Right before my wedding my sister's intestines perforated and she almost died of sepsis in the local hospital. There was no time to waste.
I've had a lot of schooling, but medicine still is by far the most interesting subject to me. I excelled in internal medicine (top of my class) from the start of physician assistant school, and I only got better when placed up against medical students at the local level one trauma center in Savannah. I remember once I had graduated from PA school, taken my boards and was looking for my first job. I attended a CME event at the local hospital. I enthusiastically told the local Gastroenterologist and his PA how much I wanted to work in GI. Ironically it turns out even though they didn't say much during their meeting with me, their office manager called me for a job interview the next day. Within a week I had my first job, in Gastroenterology (GI), with the sickest patients in the hospital. I jumped right into the fire. I had wasted nearly 7 years in school and I had a lot to learn about Crohn's.
I learned from the best, 6 different GI doctors. All had a different approach, but I integrated the best of all of them. I completed my master's degree in Gastroenterology, my thesis was current approaches to Crohn's disease. I am the first person in my family to have a master's degree. I sucked up everything those guys taught me like a sponge. And not a moment too soon. My sister landed back in the hospital again, this time with a bowel to bladder fistula (a tunnel from the intestines to either organs or the outside skin that stool empties through). That was clearly not good. The local small town GI doctor had already placed the consult to the surgeon by the time I arrived at the hospital from out of town. And for the first time I was able to fulfill that role for my family. I stood there and argued with him that she needed a consult to Duke University Medical Center, not more surgery. In the end he agreed. And at DUMC she received aggressive re-induction with Remicade, and titrating with 6 MP while monitoring the metabolites. The fistulas closed with medical management, the best the country has to offer.
But my sister, and my family live in a small town. It isn't feasible to run to DUMC for everything. She was managed for years on IV infusions of Remicade every 8 weeks. Amazingly, my sister holds a job. She always saves her sick time, just in case. She is sicker than most of the patients with Crohn's who are on disability. But we weren't raised to give up. It's not what we do. While people don't die from Crohn's, it is not uncommon for them to die from the complications of Crohn's (bleeding, anemia, sepsis, bowel perforation.)
In the past few weeks my sister has gotten worse. More pain, more nausea. It seemed like a partial small bowel obstruction, probably from adhesions from her first surgery. She had an EGD and Colonoscopy from the local scope monkey (in case you are wondering that is a derogatory term for a GI doctor only interested in making money from procedures). She was then scheduled for a capsule endoscopy, where you swallow a camera and it takes pictures of the intestines that aren't accessible by scope. Seemed like a good idea, only my sister never received an imaging test first. I didn't realize that she hadn't had that, I was hearing all of this second hand from both my sister and my parents. Where we are now is that the camera is stuck in a stricture/fistula in her intestine. This wouldn't be a problem except that the stomach acid erodes the plastic coating around the camera, exposing the the battery. The battery then erodes and causes caustic damage to the bowel until it ruptures. I've read that the capsule can be stable anywhere from a few weeks to a month. My sister's local GI doctor has referred her back to DUMC, because this has gotten "complicated." I think you can see how I feel about how this has been handled from my backhanded comments in this paragraph. i know that hind-sight is 20/20, but I really wish an imaging study had been done first.
I told my parents my sister would need surgery to remove the retained camera and they freaked. Totally shot the messenger. It's so hard that the most important patient I will ever have can not every legally or ethically be my actual patient. I only serve as a second opinion, an advisor, an advocate. And I'm still her sister and I'm scared for her. But I never let my family see that or hear that in my voice. Bowel resection is big surgery, with numerous complications, all of which I get to torture myself with until her outcome is known. So I ask for your prayers that her surgery goes well. Due to all her problems and medications, she is unable to have children of her own. But she loves J to pieces:
