Like many of you, I have struggled with health problems for the past few years – but have struggled for the longest in just getting a diagnosis. During 2005, I began to feel terrible, and had unrelenting intense epigastric pain after eating. My internist ran some tests, and discovered that my gallbladder was working at 7%. Since it was not really functioning, it was recommended that I have it removed. I did, and felt better for a while. The symptoms returned about a month later, but were a lot worse. I was referred to another specialist 2 hours away, and was diagnosed with Sphincter of Oddi dysfunction and had a biliary sphincterotomy. However, I did not have any significant improvement after the surgery. My doctor at the tertiary facility pretty much gave up on me and finally referred me back to my internist and local GI doctor.
At that time, I was so sick that I could only eat soup and baby food – and even that was painful to eat. No one could figure out what was wrong. In 2007, a local GI doctor referred me to a nationally renowned facility, and I received a call from the facility stating that a doctor had reviewed my case and thought there was nothing they could do for me! I eventually got an appointment with another facility 14 hours away. I underwent a few tests, and was diagnosed with moderate idiopathic gastroparesis. The GI fellow that broke the news to me prescribed Reglan, told me to eat a balanced diet, read about the disease on the internet, and figure out what to eat by surfing the web. He then left the room, and my husband and I got into the car and drove 14 hours back home. Still frustrated, because I thought something else may be wrong, I drove back 14 hours for a follow-up appointment. I was told by the attending physician there that maybe I pulled a muscle, maybe I was just depressed, or just maybe I wanted attention. That made me angry. I thought at one point that maybe I was losing my mind, but I had physical symptoms of pain, vomiting, and nausea – and there is no way I could be making up all of that!
I finally did my own research and found a list of the top motility clinics in the US. I decided that I wanted to get to the bottom of this… I was tired of the run around… I wanted some real answers from doctors that deal with these problems daily. I finally made a phone call to one of the most comprehensive motility clinics in the US and got an appointment rather quickly. My husband and I traveled once again, hopeful for answers. It was determined that I have severe reflux (even though I don’t have heartburn or an erosive esophagus) as well as gastroparesis. All of the doctors that I had seen before did not really go into detail about gastroparesis – only that I should not be hurting like I do. They blew off my symptoms and thought I should feel normal. Their attitude towards this disease made me feel like I should be normal and eat whatever I want, etc… This has caused me to really “be in denial” that anything significant is wrong with me, which actually made my symptoms worse. This “new” doctor actually told me that my problem was pretty moderate – and there was a problem! He did not sweep my problems under the rug or try to downplay them. We are actively trying to manage this situation. He actually gave me some dietary advice to follow. I have had consultations with a dietician that knows about gastroparesis and how to manage it. At least now I feel like I have a toolbox of solutions to my problem. It took me 5 years to get there, but I feel like I have finally made it!
For those of you out there who have been rejected by the “best” and who have lost all hope for help… please do not give up. I am confident there are answers out there for you. It may take some time and effort to find all the answers, but you will find them. It may take a long time to find a doctor that understands functional GI disorders, but he or she is out there, and has dedicated his or her life to help you. My prayer for you is to not become discouraged in your journey towards seeking help, and that you may find wellness and healing.