Diagnosed At 12

I was a seemingly normal 12 year old girl, on cheerleading and trying to make it at private school and what not, when one Friday night in September I was taken to the ER with incredible pain in my stomach, turned out to be an ovarian cyst that had ruptured. No big deal right? Well after a night in the hospital for observation I was sent home to go about my normal life. Exactly a week later I was taken in again, except this time with the worst pain imaginable and had no idea that this pain would be a daily experience from that day on. After the doctors took blood and saw my lipase and amylase levels were elevated they proceeded to ask if I was an alcoholic? At 12 years old, mind you. Obviously my parents were completely confused as to why a well educated doctor would even think thats a logical question to ask a 12 year old. He then explained that the blood test show elevations in the enzymes in the pancreas which usually indicates pancreatitis, the problem is, usually older people who drink frequently end up with this issue and he's never seen or heard of it happening at such a young age. When we asked what our options are, that was the worst part. All he said was, "Im sorry, there is no cure for pancreatitis." and simply walked out of the room. A nurse later came in to explain that I would be kept in the hospital for a week, be put on morphine as needed, and will not be fed until my enzyme levels go down. Now, Ive always been a skinny girl, but I LOVE food, I'm always eating, well I used to always be eating. Long story short, it went from acute pancreatitis to chronic pancreatitis in a matter of 6 months. After 6 years of having the most indescribable pain every single day, every time I eat, smell, or even look at food, Im so ready to give up. Ive been through surgery after surgery with broken promises from doctors that it will get better. Just this past year we found out I was born with it, it just took a little while for it to kick in I suppose. Which means unlike other people who get pancreatitis off and on randomly, I will have pancreatitis and the pain it causes 24/7 for the rest of my life and theres not a damn thing anyone can do about it. They used to say managing my diet would help but since I was just made this way everything I eat, no matter how healthy, is going to cause the pain. I just want to live a normal life again, I went off to college for one semester but couldn't do it because of this condition so I had to move back, I go out with my friends but never have as much fun because I always have this pain. I just don't know how much longer I can deal with this. Im so tired.
catrodriguez14 catrodriguez14
18-21, F
3 Responses Jan 9, 2013

Your real life story sound just like my son. He also does not drink. He is 19 and just got dx with pancreatitis on aug 14 of this year. He has been in and out of the hospital five times since then and one trip to the mayo clinic in Minnesota. My son has lost about 45 pound also and had a home health nurse because he was an tpn. The first attack they found two blood clots that almost killed him. Takes a lost of pain killers and is on blood thinners. Thank you very much for sharing. Denice in Illinois.

I have a similar story (that I will be sharing shortly) except mine begins at age 26 and has a diagnosis of "idiopathic chronic pancreatitis." Isn't it horrible that with all of us out there, so many doctors still believe it is "only" caused by alcohol and that we must be closet alchies?

I was diagnosed at 35. It was braodly classified as "idiopathic" with suspected toxic etiology due to prolonged pesticide exposure at work. Joy. Now I'm worried about pancreatic cancer as well. I'm no longer working-can't and fear terribly for my future. Which adds to the stress and seems to further provoke the pancreas! Okay-I don't want to go on and on about me. I jsut wanted to reach out to someone else who seemed to be too young to get this.

I just read your story and my heart sank. I do not have chronic pancreatitis, but my father had it twice in the summer and I have never seen anyone in so much pain. A few months later he lost tons of weight and had a mystery fever and distended abdomen. After a CT scan in the ER they found a massive cyst on his pancreas caused from his severe pancreatitis. We found a great doctor who did a rare surgery to help it, but he has about 6 months recovery until its fully gone. I am not sure what kind of surgeries they do for someone with chronic pancreatitis, but this doctor we found is highly skilled and uses state of the art techniques. He has a lot of experience with the pancreas. Maybe you could talk to him and see if he has any ideas for any new treatments. His name is Dr. Swee Teh and he is a surgeon in San Francisco. His email is swee.h.teh@kp.org In our experience, he responds quickly, so you should really ask him. You will surely be in my prayers. I am so sorry you have to live with such awful chronic pain. :( Feel free to message me if you have any questions or need support.