My name is Amber and I am 21.
When I was in 7th grade I began to have severe pain and went to the emergency room at the local Emergency room. They said that there was nothing that they could see wrong to go see a GI doctor. The next day i was doubled over in abdominal pain in the right upper quadrant and ended up in the emergency room at CHOP (Children's Hospital of Philadelphia) where they decided to keep me over night for observation. That over night trip ended up being a 3 week stay. They did tests and managed my pain and my nausea, they then did a hyda-scan to check out my gallbladder. The test showed that it was functioning at 1%. So they scheduled surgery to remove my gallbladder and appendix. I then was sent home and was told that my pain should subside, however it did not. After the surgery healed i continued to have pain and nausea. I went back to the ER where they admitted me for observation. The next morning the doctor woke me up and said that there was nothing wrong with me that my home life was stressful (due to my brother being in intestinal failure and in the hospital), and that I was only trying to get attention that my pain was not real, and to make an appointment with a psychologist. I cried my eyes out and was sent home that afternoon.
Despite being told it was all up in my head I still was having horrible pain and nausea. I went to see a psychologist who told me that my pain was real and helped me work through some issues. My mom made me appointments with all different doctors all over the area. I had tests and procedures trying to diagnose me with something. I ended up with a doctor through Jefferson/Nemours who discovered what was going on. I saw a doctor at Jefferson who preformed something called an ERCP which measured the pressures in my bile ducts. This showed that my bile ducts had very high pressures and was blocked. He diagnosed me with biliary dsykensia. From this I would get liver infections and pancreatitis constantly. My doctor introduced me to a doctor at AI Dupont hospital for children who specialized in liver and diagnostic teams. After several more infections and ERCP's they decided to do a biliary revision where they reconstructed my bile ducts. I had to have this done and the same reconstruction done and redone due to complications. I finally got to a place where I was feeling better, I was able to stay out of the hospital and was in manageable pain that would be intermittent.
Three years ago i got a bout of bad pancreatitis and had to have the same reconstruction surgery where they built a Roux-en-y connection that needed to be corrected 2 more times over the past 3 years. After that surgery I never got back to normal. I was in horrible pain and could not eat. I was put on TPN to build up my strength before the surgeon would go back in and correct the connection. After that surgery I was never back to normal. I started vomiting everything that i put into my mouth. The pain and the nausea was so severe. No one could figure out what was going on. When i turned 21 I had to change all of my doctors due to aging out of the system. I found new doctors who would only tell me that they did not know what was going on. I was put on waiting lists to see doctors all over the country. I finally got an appointment at Mayo Clinic.
I was at the Mayo clinic back in July and they did a whole bunch of testing and came out with the diagnosis of gastroparesis. I have only been diagnosed for about a month and my life has dramatically changed. I am unable to keep any food down and was put on IV fluids at home due to the high volume of vomiting not being able to keep myself hydrated. I have lost about 15 pounds in the past month. I know that my case isn't as severe as most and i do not currently have a feeding tube or on any big measures, but i do know that I am getting to the point where i know that it is going to happen whether that is going to be in a few months or a year or whenever, I know that I am not there yet, but i am scared. Yet i am also in a place where i dont know if my doctors are going to believe me or what they are going to reccomend,. Tomorrow i am getting a mid line placed for my iv fluids so i can stay out of the emergency room and not waiting for nurses to come out to the house and stick me and put in iv's that barely last and have to be stuck 4 times just to get a small line in. It is getting hard. I know that this is going to be my life and it is only going to get worse from here. I dont even know anymore. I know it is not as severe as other people but I know that i cannot keep living this way with no nutrition and no hydration.
So, for now I just have to try and stick it out and see where this takes me.
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Hi Amber! Ask your doctors to insert a port in your chest to gain access for hydration and blood draws when you are hospitalized. I've had a port for 9 years and it has been a tremendous help. Being poked constantly, just to have the line blow is so frustrating. Having a port just makes things easier. Love and Light!
I got a chest port a year ago and it has made my life so much easier! I highly recommend looking into it!!