In June 2008 I got married. My husband and I enjoyed a wonderful first year together. In May 2009, while we were closing on our house, I wanted to check out the new eateries in the area. My friends and I went to a cool pizza joint to get some specialty pizza popular in northern New Jersey. What should have been a fun experience turned to me experiencing very bad pain in my upper right quadrant. I spent the better part of the afternoon in the bathroom. A few weeks later I was told my gallbladder was functioning at 11 % and it needed to come out.
On June 17, 2009 my gall bladder was removed laparoscopically. Five days later I felt like the surgery never happened. Still in pain, I went back to my gastroenterologist, who said we could treat the symptoms and that I had to give it time. Over the next year I went through four more gastroenterologists, spent thousands of dollars on tests, and endured many emergency room visits and doctor appointments only to come up empty handed. Finally I ventured from New Jersey into New York City for an opinion. One of the new doctors told me he thought I had Sphincter of Oddi Dysfunction. He said I should travel to the Medical University of South Carolina to see Dr. Cotton and get “diagnosed and fixed for good”.
The summer of 2010 I traveled twice to have a double sphincterotomy to cut the pancreatic and biliary sphincters. Unfortunately each time I had the procedure my symptoms would return a few weeks later. At this point my doctor told me I had to see a pain management specialist because they could do nothing more for me. I was disheartened and realized that even in one of the biggest cities in the world—New York City—they may not have all the answers. I followed their direction and proceeded down the pain management track. I had a celiac plexus block and during the procedure I stopped breathing. To say the least, it was an eye opening experience for me to realize how serious this condition was. The block lasted a week and did nothing to help the pain of the next attack. Though I was disappointed, I was not going to give up. However, I definitely wasn’t going to have another block. It just wasn’t worth another near death experience. I moved on to more pain management doctors, more gastroenterologists, and, in June 2011, had another ERCP to try and open up the Sphincter of Oddi area.
That doctor ended up not cutting the sphincters. He said my best option was to burn the nerves with alcohol, which could cause me to lose bowel function or respiratory function. He advised me that was my best bet. Obviously I was crushed. I went home and by this point I couldn’t exercise, I was on a lot of pain medicine, and I just thought that all of my dreams of normalcy, kids and a fun fulfilled life were over. It took another year, a trip to the University of Minnesota to see Dr. Freeman and finally finding a surgeon to find some hope. In that year I was on pain medication that was meant for dying pancreatic cancer patients. I battled minimal change pancreatitis and I thought I would lose the battle.
I met my surgeon and he looked at me and said I’m going to go in but I don’t know what I’m going to find, but I’m going to fix it. On June 24, 2012 (two days after defending and earning my master’s degree) I had a transduodenal sphincteroplasty. My surgery lasted over 6 hours. In the end I had not only SOD, minimal change pancreatitis, high blood pressure, high triglycerides, I also had a leak where my gall bladder was removed that never showed on any test, any procedure and it had destroyed my duodenum. My surgeon fixed the damage to the best of his ability and stapled all the scar tissue back together and took out the Sphincter of Oddi. I woke up with 2 drains and a lot of hope. Unfortunately my body had some trouble cooperating and I had a PICC line for nutrition and was in the hospital for a month letting my body heal its wounds.
After I left the hospital, the recovery started to happen. I was eating. I was moving. I wasn’t in pain. By October of 2012 I was feeling more than the normality I had come to know, I felt like I was finally getting my stride back. I could go out with friends, I could walk more than a block without feeling pain, I could do the dishes without doubling over and I was starting to come off of all my medications. I could actually do the job to my fullest and best ability where before the surgery I was just going through the motions. I got published in a nationally peer reviewed journal to continue to push my career forward. And I continue to work hard and can do that because of the persistence to find my answers. Then my miracle came. I found out on Thanksgiving of 2012 that my body had healed, I had one period in two years and I was expecting a baby in August. I am in awe of how far I have come. I have a two-year-old son who is amazing. I am able to be a mom to my son and play with him. As I write this I am pregnant with a baby girl! I will always have pancreas issues. Once your pancreas is damaged, it doesn’t regenerate like the liver. Regardless, I am whole again and I want anyone who is suffering to know that there are solutions and doctors out there that can help. You can have a full life again! Never ever give up!