Chronic pancreatitis quality of care shocked

I have been dealing with pancreatitis issues since 1994, just one attack caused by an ERCP procedure. Then another attack 10 years later, in 2004. Finally last year my pancreas and bile duct went crazy. Horrible attack, long hospital stay. On Creon. A miserable year. I lost weight from 107 lbs. down to a current 88 lbs. I've had so many test, had them all. Basic diagnosis is chronic pancreatitis and spincture of Oddi. Plus dual duct dilation. I'm allergic I had another attack this past weekend. I called my GI Specialist office to ask what I should do, she was out of the office that day (Friday) but spoke to her nurse and explained I'm unable to keep anything down, severe pain, super sick. She said go to ER right now, have someone take you. I'll inform GI Specialist on call.

My husband drove me to ER. I got in, lipase wasn't elevated this time because in chronic pancreatitis it doesn't always elevate. I had blood in urine, scan showed slightly more dilation. ER took good care of me but said I needed to be admitted because I'm so thin now and dehydrated. They'd like to give pancreas rest it needed, give me pain meds and fluids and discuss how to get weight on.

I was taken to my room where a different doctor took over.

He changed the order. Said take out the IV fluids, give me one TYLENOL for the pain every 4 hours and zofram.

I thought one TYLENOL? I can't keep anything down first off and secondly I give my grandson one Tylenol per his doctor's orders when he has an ear infection or something.

Soon I was back to wallowing around on the bed in pain. They gave me my Tylenol. Needless to say, it did nothing

The nurse said he was so sorry for my pain and would call doctor. He did. Doctor said nope, I don't give pain medication for this, tell her to relax. Finally after four more hours of trying to breath and meditate the pain away a nurse supervisor came in & said we are going to give you something for your pain. They did, I fell asleep and finally had relief until the next day. They took me to put a feeding tube into my nose to my stomach. Once again no pain meds on board, my abdomen was soooo painful and I'm laying down on a stretcher as a doctor tries to make the tube go in. He had a hard time and kept saying, "well dammit! I can't get this to twist around here" and I was lifting off the table begging him to please stop. Nope, had to have it he said. Just be patient. He had a terrible time threading it through intestines. Finally done but as they are taking me to my room I felt so much pressure in my esophagus or throat. It was really uncomfortable. Back at room nurse tried putting fluid in, it wouldn't go. I said it hurts, I feel like I'm choking. They kept trying, no luck so they decided "we'll keep tube in over night so maybe you'll get used to it" I never did. It felt like I was being chocked so during the night the nurse finally took it out.

I wanted out so bad. I figured I could do a better job of taking care of myself in my own bed at home until I can see a specialist that understand the pancreas. I'm so fatigued from this weekend. I left the hospital worse off than when I went in. I've been on ice chips and things have calmed down but I'm just so shocked at the lack of compassion. Makes me so afraid I'll have another attack and will end up in that hospital again.

How do you advocate for yourself when you are so sick, in pain, and unable to communicate well just how bad you are feeling. I even asked if an epidural was an option? No, but the nurses were nice and tried to keep me calm. What's up with this type of care?

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