Julie’s Story of Courage

Categories: Success Stories

What I Have Learned from Pancreatitis

YOU are the EXPERT on your body. Your doctors know medicine but they don’t know you. Give them the information they need to do their job well: If you are feeling poorly, track your symptoms and your food, so you can give your doctors DATA, not anecdotes. This will help both of your see patterns to your health. NEVER be afraid to ask for help. You know when something is wrong. Don’t wait because you are scared or discouraged. If you are sick, it will only get worse; if you aren’t sick, then you’ll know and can get on with your life. You only have one chance at life; don’t blow it. DO YOUR HOMEWORK! Educate yourself. If your case goes well and simply, great for you! Follow your doctors orders and get well. But if things aren’t typical and you keep having problems, do some digging. Educate yourself through respected medical sites and journals. Find out how to help yourself and what problems can come up. BECOME a partner in your health care. Ask your doctor questions, ask for advice on how to maintain your health, when to call in, when to go to the ER, what diet to follow. And always be polite and listen even when you are really scared or angry. If your doctor knows you are trying, he or she will try harder, too. And always TRY their advice. If it doesn’t work for you, go back for another discussion. Ask to see a DIETICIAN. I’ve gotten great advice on what to eat and recipes to try. The kinds of food you eat can really influence your health and mood. EXERCISE how you can, when you can. Nothing is worse than being stuck on the couch in pain for days or months while life passes you by. After being sick for a long time, I was sent to rehab, which helped a bit, and then a medical wellness program, which helped a lot. Nothing has given me more satisfactiont than finally being able to go for short walks and hikes again. DISABILITY PERMIT? If you have pancreatitis you may qualify for a handicapped permit, based on your inability to walk long distances. This may sound funny, but during pancreatitis episodes a handicapped permit is such a life saver! It was really hard for me emotionally to ask for one, but I am glad I did. It makes it so much easier to go shopping or pick up my daughter from school when I’m sick. And when I am well, I’m glad to leave the parking space to someone who needs it more. Talk to your doctor about it. STAY CALM and ENJOY LIFE. It isn’t easy. If you are doing the right things and still getting sick, it’s hard to accept that this is how your life will be. I’ve had a lot of anger about my life being “taken away” from me. But I am learning to accept the new normal. I think this is a life-long process. But we all need to keep trying to enjoy all the small things and find something to laugh at. BE KIND TO YOURSELF. And to others. It will make you feel better. And it is easier to bear the tough stuff when you hold love and laughter in your heart. This is my story if you want to read it.

I was knocked down by acute pancreatitis after an ERCP in October 2009. My doctors had removed a lot of polyps during the procedure, which made my pancreas mad. Within a couple hours, I was hunched over with severe pain and nausea. We were at the ER for several hours while the doctors debated what was wrong. They sent me home and then later called me back in after my lipase tests came in off the charts. I was not a drinker and was fairly healthy overall. I was hospitalized the first time for one week. I left, still in pain, because I couldn’t get any rest there. The doctors told me that this was a fluke; I would get better and this would not happen again. They were wrong. My family began making trips to the ER on a regular basis. We joked about knowing where all the ERs in town were, and we visited most of them, often having to take along our sleepy one-year-old daughter. For $300 a visit, they would check my blood, give me morphine and send me home. By December 2009, I was hardly eating and was in pain a lot. On a visit to family at Christmastime, I couldn’t take the pain anymore and went into the hospital for testing. I was diagnosed with a pseudocyst and hospitalized. Fortunately for me, the cyst opened into the intestine, so I couldn’t eat but I didn’t need surgery. I spent Christmas, my wedding anniversary, and my husband’s birthday in the hospital in Indiana while my family was back home in Oregon. After two weeks in the hospital and another week resting with family, I was able to fly home with my sister’s help back to Oregon. Three months on tube feeding! I don’t recommend it. My doctors thought that this should be it. But I never got strong and started going downhill again. For my third hospitalization, apparently a pseudocyst had opened up into the abdominal cavity this time, but I didn’t realize it. I had necrotizing pancreatitis, so things were really bad. I knew I was sick but at that point being sick was just normal. By the time I was hospitalized, I was down to eating 200 calories a day. I was so weak, I had to get stabilized to have surgery. My wonderful surgeon, Brett Sheppard, did an exploratory laparotomy to clean things up and drain out the bad stuff. Three weeks in the hospital that time. And again no food for three months. Over the next few years, my pancreas just crapped out. I have chronic pancreatitis and am taking enzymes daily. I was on diabetic medicine for a year but with diet, weight loss, and exercise, I am off the medication for now. I mostly stay out of the hospital, using zofran, bentyl and oxycodone when my pancreas is mad. I try to eat a healthy diet and I exercise whenever I am felling well. Walking or hiking outside is the most happy thing I do. And I take time to enjoy my life and my family, pets, books, friends, and making art. One more complication, the pancreatitis caused a clot in my portal vein, which made it look like I had terrible fatty liver disease and near liver failure. It was my research that led my doctors to find the clot and perform a stent procedure on the portal vein in 2013. That saved me from a liver bypass procedure which I didn’t need!