I get asked weekly: Have you lost weight? You look so skinny.
I don’t know how to respond. I can’t even tell if it’s a compliment because I haven’t lost the weight on purpose, and I worked so hard 12 years ago to get into recovery from my eating disorder that I don’t love how I look now even if I’m at some sort of weird American ideal.
When my weight is mentioned by people I’m close to, it’s not such a big deal, but I don’t exactly know how much medical information to give acquaintances: Oh, I’m skinnier because I’ve been sick for nearly a year now. I’ve had this stomach thing going on and on with severe abdominal pain and nausea when I eat and oh yeah, the diarrhea. How are you? I like your shirt! Does it have any deep significance that would make this conversation less awkward?
But I finally have an answer to my stomach stuff… Here’s a hint:
1) June: Out of nowhere, nausea, upset on the other end (when did I get so shy?), abdominal pain that would come and go. Basically, I felt like someone had replaced my GI system with someone else’s, and that lucky bastard now has a sweet, kind and very regular GI system.
2) After a month of this, I told my doctor. She’s was not very impressed and said: Maybe IBS. I just heard BS and was given some pamphlets that I threw away.
3) I learned to live with it, which translated into being tired and cranky on my bad days. I also began to lose weight because I felt sick and in pain every other week. As an aside which would play a big role: I went on migraine medication in November. I’ve had these headaches my whole life so the medication and treatment should be unrelated, but because this particular medication can have side effects, such as weight loss and kidney stones, it allowed me (and several doctors) to confuse and ignore my story longer.
4) I had horrific, can’t-get-off-the-floor, upper abdominal pain one morning in December.
5) When the pain went away, I thought: Oh good, it’s gone. My friends thought: Get to a doctor, moron.
6) I went the next day because my friends (especially K!) are smart. My PCP’s partner (my PCP was off that day) thought: Gallbladder. I wasn’t that impressed since most of my freaders had already made that diagnosis on Facebook.
7) My PCP sent me for an ultrasound immediately after the appointment and the ultrasound didn’t show much except a tiny kidney stone. My migraine meds can cause kidney stones and this is where the art of medicine plays into the story and where I probably should’ve spoken up. I got pushed to a urologist when I should’ve said: I want to go the GI route first since my symptoms and presentation are better stories for GI. All my freaders said so!
8) The urologist was unimpressed but did a CT scan just in case I had an atypical kidney stone presentation. However, I asked to do a full abdominal CT scan since I was already getting radiated, and we both agreed that it was just as likely to be my gallbladder. He said yes at first, but his radiologist didn’t want to do it. He went with the radiologist and lied about why he had made the request in the first place (weird right?). The dude was kind of a jerk overall and I didn’t even have kidney stones. (The purple stuffed animal is not a kidney.)
9) Being annoyed about the whole experience, I went back to living sick. However, I finally realized that my weight loss didn’t start with my migraine medication, and I needed to take control of my health because I hated looking and feeling sickly. My life and work were really being affected by this. I wasn’t up for playing with my kids as much, and I wasn’t as productive with writing. I just didn’t feel like Alex some days. I asked to see a GI doctor who was a great listener and thorough. My PCP agreed.
10) In February, I finally met with a GI doctor who wrote in my chart Not IBS. He seemed to think we might find Crohn’s disease but was really looking at everything to figure out what the heck was wrong with me. He also put me on high dose reflux medication with helped a bit. I began weekly medical tests: five tests plus preps and rides and hospital wait times and fun posts like How To Prep For A Colonoscopy Or The Colonoscopy Eve Celebration Guide
11) However, all my tests were normal except my HIDA scan, which is fancy for a in-depth gallbladder scan. But of course this scan was not textbook abnormal so my GI doctor offhandedly mentioned new research that showed my results could be more-telling for surgery but he’s not a surgeon and moved on to totally unrelated and seemingly off-the-deep end ideas (to me) about how to treat my symptoms. Still being on my THIS IS MY HEALTH AND MY BODY AND I NEED TO ACT LIKE IT kick, I ask to see the best and brightest surgeon to get another opinion on my HIDA scan. My GI doctor agreed and sent me to a surgeon who says no to people (because I obviously don’t want an unnecessary surgery. I just want to feel better.) This surgeon listened to my story and replied (much to my surprise): Based on your history and HIDA scan results, you have a 75+% chance of feeling all better post-cholecystectomy. I can’t promise you anything, but I just got off the phone with two doctors who were shocked that I wouldn’t take out their patients’ gallbladders so I don’t operate lightly. What do you think?
12) My surgery is scheduled for right before Memorial Day weekend. I could’ve had it done the week after meeting the surgeon, but I’m terrible at resting. I will say OH I’M FINE. Go ahead and go back to work. I’ll just push this part of my intestines back into my abdomen while I’m walking the dog. I decided to foil myself by picking a long weekend where I have no excuses and won’t screw up my recovery.
Yes, I spent at least a week imagining what it would’ve been like to have pushed for the HIDA scan in December and for the surgery consult after that and I reimagine it after I pay the multiple bills for each medical test I had in March. It’s amazing that the hospital charges me for doing the scan, the GI doctor charges me for reading the scan and sometimes they also send my scans out to a random radiologist that I’ve never seen and that guy charge me, too. I want everyone to get paid for their work, but I told my husband that pediatricians don’t play the game well enough because he doesn’t charge for reading any results.
Yes, I think it’s unfair that I can’t say: My urologist said the ultrasound wasn’t well done. I shouldn’t have to pay for a bad ultrasound since that’s part of the reason I had to get the CT scan.
Yes, I think it’s unfair that I can’t say: My GI doctor should’ve sent me to the surgeon right after the HIDA scan instead of to another test that was normal and now I have to pay for.
Yes, I think it’s unfair that my PCP’s partner isn’t docked for basing his decision on one bad ultrasound, that he clearly didn’t even look at closely, instead of my history. (But I also know that PCP’s aren’t paid nearly what they are worth so I feel less strongly about this one. I also feel like if I had spoken up, I could’ve very easily been sent to the GI doctor. Sometimes having my MD makes me worry that I will try to take over my healthcare, but I don’t know every answer and I don’t keep up on everything seven years out.)
But I finally able to put all that aside when I discovered that I could buy a gallbladder. YAY!