Me and a stuffed organ

The Answer To My Stomach Woes

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:

Me and a stuffed organ
My friend, @Iknowtiffany, found the set over at World of Mirth. It’s by I Heart Guts.

Before the big reveal, let’s review how we got here especially for those who aren’t following my every move on Facebook and Twitter:

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!

Stuffed Purple Gallbladder
This way I’ll always have one by my side. Just not INSIDE trying to kill me.

Alex Iwashyna

Alex Iwashyna went from a B.A. in philosophy to an M.D. to a SAHM, poet and writer by 30. She spends most of her writing time on LateEnough.com, a humor blog (except when it's serious) about her husband fighting zombies, awkward attempts at friendship, and dancing like everyone is watching. She also has a soft spot for culture, politics, and rude Southern people who offend her Yankee sensibilities. She parents 2 elementary-aged children, 1 foster baby, 3 cats, and 1 puppy, who are all Southern but not rude. Yet.

28 thoughts to “The Answer To My Stomach Woes”

  1. I’m glad someone [might] finally have an answer for you. I really hope the gallbladder is to blame and that you can return to a normal life once it’s gone. I feel so much empathy for you because I’ve been there. It would be so awesome if we didn’t have to pay doctors’ bills when they screw up! I looked into filing a malpractice suit against the doctors who missed my very obvious symptoms of Ehlers-Danlos because they should be held accountable for their misdiagnosis. I was angry when I found out that nothing could be done unless I could prove that their incompetency directly caused quantifiable physical damage to my joints. It’s just not fair that doctors can misdiagnose people without repercussions.

    -Lisa

    1. I hope so, too. And I’m so sorry that you had so many consequences to your missed diagnosis. That sucks and feels so unfair. I hate the powerlessness in it. I’m sending you a big screw the industrial-insurance-healthcare-complex hug.
      For me, I don’t want to sue — I just want to not have to pay for the unnecessary, not-thought-out and not-done-well tests. Like I’ll totally pay the HIDA scan and the consults and even the colonoscopy and endoscopy. Other ones like that CT scan just for my kidney stone? Makes me so mad that I need to hug my gallbladder.

  2. I went through this almost exact same ordeal last year…and oddly…my surgery was last may too. Must be a lucky month.
    It took a while for everything to fire normally (can I use that word to describe bowels and junk?)
    But if they’re saying it’s a 75% chance of you feeling better it’s worth a go. Sometimes there are problems with the valves in there. I know things.
    And screw everyone who says “You’re skinny” I lost over 20 pounds waiting for surgery.
    So meh.
    Ps. I need that gallbladder.

    1. Hearing that you lost weight, too, makes me feel better. We’re like gallbladder twinsies!
      Oh and I’ll take 75+% over everything else I was given post-workup — plus, lots of people get surgery on worse percentages — they just don’t realize it.

  3. First, lets clear up any misconceptions people might have about me. I’ve .never. been called skinny.

    Now that that’s out of the way, I have had weight fluctuations from medicine (mostly gain). I have had weird oddball bowels. It turns out I don’t have Crohns either, but I .do. have IBS. Plus this weird anxiety thing that plays into it. So I haven’t experienced that pain, but I can tell you I fully understand some of the other stuff you’ve gone through. And I’m sorry that you had to deal with it.

    It’s funny to me that you say because you have an MD you don’t want to take control of your healthcare, but I think everyone should have strong (though not total) control of their healthcare. MD or not. One of my favorite jokes ever is the following:

    Q: What do you call the guy that graduated dead last from medical school?
    A: Doctor.

    That’s right, just because they are a doctor doesn’t mean they’re right for you. It’s unlikely they’re just stupid, but maybe they aren’t up the literature. Maybe their specialty is the opposite of what you need. Either way, it’s good to have a second opinion and to always seek out the best doctor you can get in to see.

    I wish you much peace and comfort going forward.

    1. For me, I don’t want to be my own doctor because I can’t be objective. Just like Scott can’t be our kids’ doctor. Like my reaction to having “can’t get up off the floor” pain was to ignore it after it went away. Because I can’t imagine going to the ER as an MD unless my arm was ripped off. Also, I’m stoic by nature so it’s doubly bad.
      I think people do need to advocate for themselves and I hope my story helps people to see that they should speak up and how easy it is to get caught up in the system. I did a lot better when I was vocal than when I just went along with things although my doctors helped me to know what to be vocal about and how to proceed. It should be a partnership and I think both sides dropped the ball at times inadvertently and at times because they are overworked and at times because they sucked and at times because I was sick and tired and scared.

  4. Good Lord! First…I had no idea what a gallbladder looked like, but if they’re all cute and purple and fuzzy, they need to be highlighted more often.

    Second, I so hope this will make you feel better, friend. I’ll be sending positive healing thoughts from the west coast where our doctors tell us we have thinks like leaky bowels that cause toxins to invade our blood streams resulting in allergic reactions that can all be fixed by following his special Leaking Bowel Diet TM.

    Much love to you and your soon-to-be-exiting gallbladder! (What are you going to do with it? Is there some sort of gallbladder burial ceremony where you plant a tree over it or something?)

    1. I think the gallbladder tree planting ceremonies are only in your neck of the woods. I’m pretty sure if (WHEN) I show up with my furry purple one, I will freak my surgeon out quite enough.
      I wonder if there’s a flower or bush with gallbladder-shaped leaves I could plant though?

  5. I’m going to admit that I have no idea what a gallbladder is or does but I’m glad you’re taking it out to feel better.

  6. Good for you for taking control of your own health care! Even when you have the knowledge it’s intimidating to tell a doctor “no” or “I think I need this instead.” I had similar symptoms, but I was misdiagnosed for 13 years with another GI disease before a new doctor took a look at my gallbladder. It’ll be two years in July since I had mine out and got my life back! It’s amazing the trouble that bile maker can cause!

    Best of luck with the surgery!

    1. Thanks for sharing. Through all of this you’ve helped me. For years I’ve had all the symptoms of diabetes but no diagnosis. Most doctors blew me off for trying to diagnose myself. My good friend is diabetic and I have been learning from him. I even shelled out for a meter to monitor my sugar. FINALLY. My new doctor took me seriously when I listed my symptoms. When my blood work came back she said I was diabetic. I responded with a very loud WOO HOO. She said that wasn’t the normal response she gets. I told her I was excited for finally getting some treatment for a condition I damn well knew I had. It has been six months on metaformin. I’ve lost 30 pounds and aren’t passing out any more (hypoglycemic). Well, maybe not as much. Reading about your journey encouraged me to take action. Thanks.

      1. I’m so glad that I helped you and that you got the right diagnosis finally, too. YAY!
        Oh and you can publish my plushy pic if it’s to your blog — where are you thinking?

  7. I’m so happy that you hopefully finally have an answer! Sending lots of good surgery thoughts for a quick recovery and relief from symptoms!

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