Posted by admin | Filed under Abdominal Pain, Acute & Chronic Pancreatitis, Gallbladder Disease, Sphincter of Oddi Dysfunction (SOD)/Biliary Disease
Dec. 27, 2010
To bring in the new year, I’ve decided to start a blog. I will discuss and share my experience with living with Sphincter of Oddi Dysfunction, Pancreatitis and the pain and struggles that comes along with it.
My name is Julie. I’m 28 and married. Overall I was a pretty healthy kid but I had some issues with eating fatty meats. I got mono in high school and shortly after I developed an arrhythmia (tachycardia) and asthma. Later I started getting severe left and right upper abdominal pain under my ribs, nausea and slightly elevated lipase. The pain would last anywhere from a few days to a few months. I had many ER and doctors visits, abdominal ultrasounds and CT scans. One day my neck started to hurt and I could barely move. The pain traveled to my right shoulder and went all the way down my arm. It was very painful. The ER doctor came in and told me it was Pancreatitis. I was referred to good local GI doctor the next day.
After reviewing my chart he felt it could be my gallbladder. I had a HIDA scan to check to see how well the gallbladder was functioning. Results came back fine. I started to lose weight and got very ill so they thought it would be best to take my gallbladder out anyways. My gallbladder had no stones and was healthy but slightly inflamed. The doctor said my bile ducts were narrow. I felt pretty good for about a week. Then I developed a new kind of pain – severe attacks. I got pale, sweaty and my heart raced. It felt like someone was stabbing me over and over in the center of my abdomen just under my ribcage and it radiated to my back, then up to my chest. Thus far, I have had 11 of these attacks. They can last anywhere from 5-30 minutes. I was told that it was Sphincter of Oddi Dysfunction (SOD). It’s a rare disease where the bile duct opening spasms and does not allow bile out as it should. The pain is severe enough to make anyone scream, cry and beg for mercy.
To make a long story short I have since had three ERCPs, a biliary sphincterotomy, pancreatic sphincterotomy, umbilical hernia repair, heart ablation, I’ve been battling chronic pain, malnutrition, hypotension (low blood pressure), vomiting bile, nausea and been hospitalized a few times here and there. And now, just in the past few months I’ve been told that I have Chronic Pancreatitis and that my ducts within the pancreas are narrow which is causing a lack of enzymes for digestion. And since the enzymes are not being released, my pancreas is getting digested and inflamed instead. This is still new to me but I will updated as I venture through it.
It has been a very long four years with many procedures – with more to come in the near future. I understand how it feels to be told it’s a rare disease. To be told it will be a life with chronic pain – that it may be hard and painful to eat. It’s easy to feel alone – like there is not one person out there who could understand. And for the family members who care for someone going through this, it is heartbreaking and hard to watch a loved one suffer. But with good support groups and knowledge, it makes it a little easier to gain hope and strength. So, here I am sharing my story and asking others to comment and discuss. If this reaches at least one person then I know that my time has been well spent.