I knew something was terribly wrong, and I was terrified.
It wasn’t unusual for me to be up all night vomiting. It was a particularly painful experience, one with a tightening at the midline that became more intense by the minute until my body would convulse and try to expel everything. After about ten minutes of heaving, I’d have a short period of respite before it would start again. That could last for hours.
This time, though, the pain didn’t ebb, and it was excruciating. You know when the doctors give you the pain chart and the scale is “no pain” to “the worst pain of your life?”
I was at the far end of the scale for the first time. And I was terrified.
I can take a lot of pain. You build resistance to it when you’ve got it every day. After a while you really don’t notice it much. But this was like everything inside me was tearing itself apart. [spoilers!] I could barely stand. I could barely think.
Somehow I managed to get to my Mom and as soon as she saw me, she knew I needed to go to the hospital. The ride there was the worst thing yet; I felt every bump and Mom was trying not to freak out because I was obviously in very, very bad shape.
Cracking jokes in the face of death, that’s me
I wasn’t in the waiting room at the ER for long.
This was different than my past experiences at the ER for gut complaints, so I knew I was in for some serious shit.
Back in a cubicle, I was asked all the standard questions: what are you allergic to? Are you pregnant? [that one got a joke out of me as I whimpered from pain, because I’ve been in menopause for a while] What’s your pain level? Really the worst you’ve ever felt?
Look, friend, I think I’m dying. It feels like an alien is going to come out of my midsection. I wouldn’t be here otherwise.
Things get real serious after that. To be honest, I don’t remember everything that happened in great detail, because I was in so much pain. The next clear memory is me being prepped for surgery, with kind voices telling me that I’d be okay, and that they needed to take out my piercings and that I should lie back and breathe deep and…
I woke up, much later, in a recovery room. Eventually I got to see my mom and assure her that despite all efforts to the contrary by my body, I was still alive.
It all started with a pizza sub.
My gut trouble started in my early 20s. Actually, that’s not accurate. Looking back with the information I have now, I realize that signs were there much earlier but as I was a kid with no point of reference and a lot of anxiety, I just thought that bathroom urgency and regular tummy pain was a thing people had.
I first noticed a problem while I was working and I needed more bathroom breaks than everyone else, and mine were often much longer. I was very stressed out – a terrible, abusive relationship, deep depression, and a very precarious living situation – and I thought that was most of it. During that time I became a vegetarian, partially in hopes that eating better would help, and I tried various methods for calming my anxiety. They worked to some degree, but not really, as I’d find out later.
My first experience with food rejection was nothing remarkable. I thought the pizza sub forcibly came back up because of food poisoning, a reasonable enough deduction considering that I hardly ever threw up from anything. It was extremely unpleasant, but I wrote it off until much later, when I began to see the patterns of my past in a new light.
I struggled with occasional urgency and a “grumpy tummy” for years, but I thought that was a normal thing for some people. [hint: it is not.] I tried different diets for years, including or excluding things, looking for a fix.
Years later, I started having serious issues with food rejection, aka painful, cyclical vomiting. Remember my description at the beginning of this piece? I used to have that happen on a regular basis. Often it would be at a time of high stress, like a holiday or a big event, so I thought it was more about anxiety than anything else. But it gradually got bad enough to send me to the ER.
At least I got to look at my organs while I was there.
I was dismissed, after sitting in the waiting room for HOURS, circling between a chair where I writhed in pain and the public bathroom, where I serenaded the other people waiting with my loud gagging sounds. People were begging the nurses to take me back, because it was obvious that something very wrong was happening. I looked like hell, totally pale and unstable. The nurses kept insisting that there were others worse off than me. All I wanted was for the pain to stop, honestly. I was too weak to protest.
The exam I finally got was fruitless.
They gave me zofran and painkillers and fluids, and that immediately helped me feel more alive. But they decided that my pain must be from my gallbladder, and when a sonogram proved that assumption to be incorrect, they just gave up on me.
I went back at least one more time for the cyclical vomiting and again got no insight or answers. I started looking for answers online because it was obvious that I was on my own. I found info about CVS, or cyclical vomiting syndrome, because that fit the description of what was happening perfectly. [irony? if you look at the link you’ll see that Crohn’s Disease is listed right above it. But I had no way to know that’s what was going on yet.]
That gave me something to work with, at least. And using some of the suggestions I found in various fora and pages about CVS, I was able to ease it a little.
For a while.
To be continued in part two!
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