I'll Cry If I Want To

It’s not my party, but it’s definitely my life, and I’ll cry if I want to. Let me be clear in separating my latest woes: ostomy = amazing, partial blockages from adhesions = annoying and painful and really frequent experiences. And so this past week, I found my belly stirring with my trademark pre-blockage symptoms of pain, decreased output, and nausea. I can keep it at bay for a while via a liquid diet (so not thrilling), keeping active, and heat bags. But sooner or later, my adhesions will fully wreak havoc and send me to the ER.

Thursday night was my first stop in the ER. I walked up to the triage desk, the nurse asked me why I was there, to which I replied, “I have a permanent ileostomy from Crohn’s Disease and I’m having a partial blockage.” She looked up at me and asked me to repeat it. I understand that I’m not having a heart attack or bleeding all over the floor, but I hate waiting in those waiting rooms while everyone gets called ahead of me while I wait not so patiently doubled over in pain and frustration. But finally they did call me and off I went, journeying back to the medical world. I had tried to beat the blockage to the punch, before my output was non-existent but while my pain told me it was coming. Traditionally an NG tube to decompress my stomach or being NPO will do the trick, but the ER doctor - who, in fairness did seem sympathetic - wanted to be conservative and gave me some fluids, some morphine, and sent me home on clear fluids.

That was the first mistake. As I learned last summer especially, clear fluids cannot provide any nutrition and exhausted me further. I was too tired to get on my computer and interact with the world and instead slept away the days beneath my quilt moaning. I woke up in the middle of my night to my phone buzzing with the arrival of an email and habitually put a hand on my bag. Flat as a freaking pancake, aka time to panic. No matter how much I drank and how many popsicles I munched, my ostomy refused to fill up. So I survived for a day and a half before I was waving the white flag again. Refusing to wait in the ER again, we arranged to meet the GI on call. Little did we know, we had to still wait for an hour in the waiting - my Mom and I were not so gently introduced to ‘Intervention’ on TV - before we saw anyone.

The whole experience left much to be desired. No success in trying to get bloodwork left me with a black and blue left arm since my right arm has clots and they can’t poke it. The GI doctor - fellow, not attending - was nice enough at first sighting, but refused to give me pain meds (as narcotics slow down your gut) or do another Xray or more testing. This may sound arrogant on my behalf, but I didn’t go for their opinion, I wasn’t asking, I was telling them what’s wrong and how to treat it. But no. They wouldn’t dare listen to me. After crying to my Mom after the GI left about how frustrated I was, the nurse called the GI back to talk, thinking this might get him to order an NG tube or perhaps listen to me. He walked in, and you could tell the battle lines had been drawn, me versus him. He refused the tube. He refused giving me pain meds. He refused to ‘indulge’ me in my ‘coping mechanisms.’ Excuse me, but the last time I checked, I was living in my body and know that if I have a blockage and my ostomy stops working, it’s darn right dangerous and I should get to an ER. I was so deeply offended by him that it left me speechless, and I’m hard to leave speechless. And so eight hours, two liters of fluids, bruises and blood, and my advocacy responsibility called into question later, I was on my way home.

Blockages, like tears and many other things in life, come and go. I’m finally on the mend - again - but still find myself seething with annoyance and frustration. I hate when people try to use emotions against me, because at the end of the day, it’s facts for them but it’s my life they’re determining and yes, I’m going to cry when I’m upset and in pain. If I didn’t, then I think something would be wrong with me. That GI didn’t know me, he doesn’t know how I live my life and how I fight to have it in spite of my disease. He doesn’t live in my body and doesn’t know the agony it has endured. It can be easy to shut up around doctors like that when you feel like you’re getting no where, it happens to the best of us, but we have to stand our ground and speak our minds. So it might offend a doctor, it’s our lives and we have to make the best decisions for ourselves. We should be able to cry when we need to and speak our minds and be genuinely listened to.

All I have to say is, it’s my body, and I’m going to do what’s right for me, thank you very much.

Jennie