Shooting the Shit: Entry #1
This is the place where I will say whatever I want, and I hope you will too. Feel free to jump into the conversation by leaving a comment. I will read all of them and try my best to respond to everyone.
Currently, I am dealing with a new diagnosis of Metastatic Crohn’s disease (defined as skin lesions present in areas noncontiguous with the gastrointestinal tract). According to the National Library of Medicine it’s the rarest cutaneous manifestation of Crohn’s. Lucky me. I must have stepped in shit.
Lately, it’s been a cycle of several MRIs and too many days spent in bed, over a toilet, and at the university seeing a slew of doctors to get me ready for my infusions of Remicade…
The most noteworthy event had to be when they removed a piece of my labia to biopsy.
I have had several MRIs on my pelvis, rectum, and brain this year. Each with their own memorable story but when you have this many scans in one year it’s hard to remember.
I struggle to recall which MRI had the nurse roll me into the MRI with pieces of metal on my lap and which one made me vomit for 2 days after giving me a shot of glucagon.
I urge other ostomates to approach this one with caution as it slows the bowel down, and for me that looks like no appetite and lots of vomiting. I told them to make a note on my chart that I will not be taking that again.
Of course when I went in for the next MRI they tried to give it to me again.
When you have as many medical procedures, tests, and visits as I do, you don’t always see the best and the brightest of the industry.
When I objected to the shot and referred to the note on my chart, they informed me that the note encouraged the use of this medicine.
So then we entered that awkward time where the medical professionals try to determine whether the patient, a consenting adult of sound mind, is allowed to decline the thing that made them puke for two days.
Eventually they informed me that I would need to formally refuse treatment.
Which sounds dramatic.
I wasn’t refusing a heart transplant. I was declining the vomit juice.
After several minutes and what felt like a small legal proceeding, they agreed to proceed without it.
Somewhere in my medical record there is now almost certainly a note that says:
“Patient refuses glucagon.”
And right below it, probably another note that says:
“Offer glucagon.”
I recently started Remicade, which is a biologic medication, and I’m also taking azathioprine, also known as “aza,” in the IBD community.
Azathioprine is technically a chemotherapy drug, which is not a phrase you enjoy hearing your doctor say, it’s right up there with, “We’re going to need another MRI or we may need to place an NG tube.”
So far I don’t have much to report because I’ve only recently started both. I think the aza may have made me sick for a few days but both meds are meant to shut off my immune system, so maybe they are working and I caught something, even if they didn’t help with my Crohn’s symptoms.
Maybe it will help. Maybe it won’t. Maybe it will help a little. Maybe it will give me a weird new side effect where I can suddenly smell pennies from three rooms away. I have no idea.
What I do know is that being chronically ill is time consuming. We are always getting blood drawn, scheduling scans, rescheduling scans, driving to appointments, and trying to remember which doctor told us what.
At some point this year I became a part-time patient. The pay is shit.
Anyway, this is the first entry. There will be more stories. Some are funny now. Some were not funny at all when they happened but have matured into comedy, like a fine wine or an ulcerative colitis diagnosis turned into a Crohn’s diagnosis.
Anyway, thanks for reading.
And if you’re here because you have ulcerative colitis, an ostomy, Crohn’s disease, or some other medical condition that requires you to know far more about your intestines than any reasonable person should, welcome.
I’m sorry you’re here.
But I’m glad you’re not alone.
If you enjoy this kind of oversharing, subscribe to the free newsletter. I have a feeling my many blessings aren’t over and the medical industry isn’t done providing material just yet.
More soon. Assuming nobody schedules another MRI first.
If you’re dealing with your own medical nonsense right now, I’d love to hear about it. Leave a comment and let me know what’s been going on with you.