Trying to explain pancreas pain...it's not my stomach!

I go to my medical appointment today. I am famished from lack of food and water intake. I take three small bites of an apple and drink a little bit of water before heading into the medical office. By the time I see the nurse (she will be the one doing the appointment), my body is trembling, and I am fighting hard to breathe from the pain shooting forth from my pancreas. I can barely move my left arm from the incredible pain radiating to my left shoulder. I am fighting hard not to scream.

The nurse tells me even though I do not eat gluten, I am probably reacting to eating gluten unknowingly. I explain I do NOT eat anything except fresh or frozen fruits and vegetables. I do not eat any packaged products. The nurse decides maybe it is H. pylori causing my issues. I have been tested numerous times for this bacteria. I even had an endoscopy in September which included biopsies for the bacteria and blood and stool tests. In 12 years of being tested for this bacteria, all tests have been negative. The nurse insists it could be lurking around my stomach somewhere making me sick.

The nurse keeps pushing medicine which blocks the acid in the stomach. I CANNOT take these medicines. I do not have heart burn, but these medicines give me the worst heart burn, nausea and make me puke my guts out. I have been told this is probably because I have low stomach acid. These medicines decrease the acid in your stomach. If you already have low stomach acid, decreasing it even more means food is not broken down in your stomach. Undigested food will try to enter your small intestines and cause MAJOR GI upset. The nurse cannot comprehend this. Maybe I need to try a different medicine to decrease my stomach acid. I give up trying to tell her heart burn is NOT the reason I am here today. I HAVE PAIN IN MY PANCREAS!!!

I cannot eat any food in the morning. In the afternoon, I can eat a tiny amount of vegetables and some water. My pancreas spasms, causes intense pain and radiates pain to my shoulder. The spams are so powerful, they make it impossible to sit up. At times, the spasms are so violent, I double over in pain and cannot move. It is somewhat manageable with powerful pain medicine…pain medicine which will probably run out all too soon. At night, I can swallow a little bit more food. The pain and pancreas spasming remain, but it is tolerable. When I go to bed, my pancreas pain and referred pain to my shoulder make it difficult to sleep. Then, in the morning I start the day all over of fasting until late afternoon.

I leave the appointment in frustration. The nurse orders some basic blood work and a stool sample to check for H. pylori. (I just had these tests done in October by this clinic. But, the nurse is convinced H. pylori is causing my issues.)

I don’t know what to do. I am trying to see a different doctor, but the next appointment is not until December 30. I am not sure I can wait that long. Malnutrition, my pancreas spasming and the pain are greatly taxing my body. I look at the calendar and ask God for a few Chanukah miracles. I am in so much pain. I am so tired.