Cameron’s Erosion Erupts (Again): Bleed the Eighth

Update: The current (November 2014) hypothesis among my doctors is that whatever they were called in my past posts — Dieulafoy lesions, Cameron’s erosions, or bleeding ulcers — all these bleeds have their source in the portal hypertension which comes from cirrhosis which is caused by my auto immune system attacking my bile ducts, that is, my primary biliary cirrhosis.

Back when I first decided to write about having primary biliary cirrhosis in November 2009, I never figured that this would become my bloody blog. I have neglected the blog for months because if I am going to follow through with my plan to write an account of living with this auto-immune illness, then I have to, once again, post about another bleed. Each has its own special moments, however, and here I have two warnings for you, and a comment from my gastroenterologist.

Once again, as in bleed 7, the culprit was my Cameron’s Erosion (or Lesions), an ulcer “in the hiatal sac of patients with hiatal hernia,” which is how Wiipedia’s 2-line article describes the thing. You know you have a rare condition when Wikipedia has next to nothing. I described what I learned about Cameron’s after bleed 7.

The link to PBC is that because my liver is compromised by the disease, it is too dangerous to repair the hiatal hernia.

I’m getting better at identifying the onset of these bleeds, anyway. This time I even drove myself to the hospital. Signs were clear: black BM and the taste of iron in my mouth.

Now for the three things that made this bleed memorable, and some advice.

1. Do not let a doctor put in an IV. There is some incompatibility between all the things that I might need intravenously during a bleed, and so I end up with IVs in both arms. I had a great nurse in the ER who inserted the first IV as painlessly as I can remember. Then this doctor or resident drifted in. I could tell he hadn’t been on the job long — and thought he was God’s gift to the world — because he was wearing a V-neck scrub top that let me see way too much of his curly chest hair way too close up. He wanted a little practice with IVs, I guess. So he tried to start the second line. And failed, miserably. Blood spurting and me doing the vasovagal response — that is, fainting. Finally the nurse guided the doctor’s every move and the second IV was inserted.

She was a great nurse, and I asked her later, how do you stand that — doctors coming in and thinking they can do all you can, and you having to deal with the aftermath. Diplomatically, professionally, she responded that at least that doctor will think twice before he gets snippy when a nurse has trouble with an IV.

2. It hurts like hell to have your stomach pumped. And it’s worse when there’s no reason to do this. My bleeds sometimes have two parts: black stool and vomiting. The vomiting always happens, but when both occur, usually comes an hour or two later. This time, I got to the ER before I vomited. All that I needed was time, but for reasons best known to himself (and that itself is a problem), my ER doctor decided that instead of letting things take their course, he would pump the blood from my stomach.

Never again. I would have been better off sitting outside the doors of the ER until I threw up.

I always imagined stomach pumping would involve a tube down the throat, turning on the pump, and whoosh, all done.

It isn’t like that.

This is what it is like to have your stomach pumped: A tube is inserted up your nose and down your throat. If the first nostril tried gives the nurses trouble, then they start over with the second. They keep giving you water to drink so you swallow, and swallow down the tube. Maybe it was just me, maybe the tube was just lodged against a nerve, but it hurt like hell the entire time the tube was up my nose and down my throat. 

And the entire time isn’t a matter of minutes. It’s a matter of hours. The pumping is slow and not constant. You watch the content of your stomach (in my case, red blood followed by black) slowly proceed down this thin tube. Sometimes it starts flowing backwards. 

I supposed most who OD and have their stomachs pumped are out of it. I can’t imagine that anyone who has had it done would risk OD’ing twice. I was not out of it. Other than a local anesthetic sprayed in my throat, I had no recourse but to lie there in pain between 1 and 5:30 in the morning and watch my blow flow out of my stomach.

I talked to my floor nurses about this, and each said, you always have the right to refuse a procedure. And refuse I shall. 

3. Don’t go out during lightening storms. This was her advice when I asked my gastroenterologist how often people have both PBC varcies and Cameron’s lesions. First she suggested buying lottery tickets, and then backtracked, since having bad luck doesn’t mean having good luck too. (I spent an hour at the Harrahs in Cherokee last week and never once was ahead.)

Actually, her advice misses the mark. Not going out during lightening storms is an action I can take to avoid without fail being one of the rare people struck down.

But there is no way I can avoid without fail the next bleed.

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3 thoughts on “Cameron’s Erosion Erupts (Again): Bleed the Eighth

  1. If she has just been diagnosed and they know she has varices, I am ASSUMING this means that she had a fairly recent upper endoscopy. During the endoscopy, they would have evaluated the varices and if any looked ready to blow, then they would have banded them off, most likely, which means it would be really surprising if soon after she had problems (but not impossible). I have grappled with the same question regarding flying, and I continue to fly. My hepatologist says that there is no reason to stop living as full a life as I feel up to because there is a slight chance things may go wrong. If I were in your mom’s place and had to balance the remote chance of having varices en route vs. the certainty of the pleasure I would have at being at your wedding + the disappointment I would feel if I had stayed home, I’d go. And if you were my daughter, what I’d most like is to think that your day isn’t going to be fraught because of worry about me, and that you will support me if I decide to come and understand if I don’t. One of the burdens I feel as someone with this illness is a responsibility for my loved ones’ distress and anxiety. I know it isn’t my fault I am putting them through this in the sense that I surely haven’t chosen to have PBC, but still, I feel guilty about worrying people.

  2. My mom has just been diagnosed with stage 4 PBC. She has esaphagal varicies and is to fly out for my weddng in three days….. this doesn’t sound like a good idea to me but what do you think. I also wanted to say I appriciate your blog it helps me to understand from a personal veiw more than a medical veiw.

  3. Thanks for writing this,Laurie. Hugs to you for having gotten through this and for writing so clearly and honestly about it. The human body and human beings are fascinating,but few people can convey that fascination as well as you do.

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