Subsequent to the Emergency Room visit that occurred approximately two and a half weeks ago, I was admitted to the hospital on December 19th. I have been taking a medication called Imuran to treat my Behcet's in attempt to put me into remission. For the past two months I have taken 50mg daily. The medication can cause some serious side effects, and so I was reluctant to take it. However, I have already taken those meds that pose little damage and none of them were effective. Each drug I try now will likely cause increased side effects and has the potential to cause some serious medical issues.
On the morning of December 19th, I walked into the kitchen for breakfast around 6:30. I had a little pain in the middle of my abdomen, directly below my ribcage. It was not that bad at all, just felt as if I had pulled a stomach muscle or something. I was only able to eat a little bit of my breakfast as the pain began to worsen. Within two hours, the pain had escalated from mild to extremely severe. My stomach felt quite bloated and it was uncomfortable to breathe, sit, lay down, and walk. Any position was painful. I had to lie on my back, and although the pain was still severe, it was the only position that did not cause the pain to become more intense.
I called my mother at work. She encouraged me to contact my doctor on his cell phone. He instructed me to try a liquid antacid and to wait a couple of hours. If the pain did not subside, I was to go to the ER. My mother immediately left work, went to the drug store, and came home. I took the antacid right away, wishing that this simple over the counter medication would treat the pain. While my mother was in transit, I called my youngest sister to have someone to talk to. I was terrified because I thought I may have appendicitis, problems with my gall bladder, or something else. My imagination was running rampid with all these ideas as to what the cause of the horriffic pain could be. She tried to distract me, make me laugh, etc. Yet nothing could take my mind off the pain I was experiencing. This was without a doubt the worst pain I had ever experienced in my entire life. And I have a pretty high tolerance for pain, considering I deal with it on a daily basis. Anyway, I digress.....My sister and mother thought I may have gas, so I walked around, ate a cracker, drank sprite....nothing eased the pain. In fact, it got worse despite the fact that I had no idea it could possibly get any worse. I begged my mother to take me to the hospital. I wanted to call 911. We called my doctor back and he agreed I should go. My mother drove me and every little bump in the road sent me into screaming fits.
Upon arriving at the ER, we discovered that numerous patients were awaiting treatment. Some of them were suffering from symptoms of a stroke, so they were taken in first. I sat in a wheelchair silently begging for them to take me back. I was screaming in pain. Others who were waiting stared at me, and I did not care. The pain was constant and I was going insane. It had been this way for about 5 hours at this point. Finally, I was taken back and put into a bed. The ER was so busy that I was taken into a room with four beds and only curtains separating the beds. This was a kind of waiting room but they were able to start an IV and start assessing me. Shortly after I was taken to a real room. I was not allowed food or drink because they needed to determine what was going on. My mouth was so dry because of the ulcers. That was the least of my concerns, although it was annoying. The doctor did not give pain meds right away because he wanted to see me first. He did an examination and ordered a CT with contrast to assist in diagnosing the problem. The nurse administered pain medications, however they did not even take the edge off.
The CT results revealed acute pancreatitis. Pancreatitis can occur for a variety of reasons, including alcohol consumption, high cholesterol, trauma to the abdomen, gall stones, or medications. I don't drink, had no trauma to my abdomen, do not think that I have high cholesterol, and the CT did not reveal gall stones. Therefore, it was assumed that one of my medications was the culprit. However, Behcet's Disease causes inflammation in my body, and pancreatitis is essentially inflammation of the pancreas. So I believed that it was due to the Behcet's.
Without delay I was admitted. They said I would probably be there for a few days. My mother went home after 8 hours in the ER. The pain did not subside at all for about 2 days. Laying on my back was the only way I was somewhat comfortable. I attempted to lay on my side, but it felt like a bowling ball was in my abdomen. Words cannot express the pain I was experiencing. When you have pancreatitis, the pain is constant. I am struggling to find a comparison that would allow everyone to comprehend what this felt like. The treatment for acute pancreatitis is a large amount of IV fluids administered very quickly in order to flush out the medication that caused it, in addition to decreasing the inflammation. I was on high doses of IV pain medication, but the pain meds did not begin working until the second day. I also received an ultrasound on the second day to rule out gall stones for sure. As suspected, it was not gall stones. In addition to my Primary Care Physician (PCP), a gastro doctor was brought in on the case. He informed me that Imuran was the medication that had caused pancreatitis. Statistics show that 1/100 people taking Imuran can get pancreatitis. The third day, an anasthesiologist visited and put me on a PCA, a device that administers pain medication through IV when I push a button. The PCA effectively alleviated my pain.
I was unable to eat or drink, even water, for over 3 days. It was torturous. At first I did not really care because I was super nauseaus. But slowly, that subsided and I was starving. When you have pancreatitis, the enzymes that are responsible for assisting in breaking down foods are elevated. The normal Lipase levels in people without pancreatitis is 70-700, somewhere around there. My levels were 3100 the first day, escalating to 3600 the second, and then quickly began decreasing. The third day my Lipase level was 2000. Fourth day, 839, etc. I was in the hospital for a total of 6 dats. I started introducing clear liquids into my diet on the fourth day. That went well, so the next day I was upgraded to soft foods, low fat diet. It is important to re-introduce foods slowly in order to allow the pancreas time to rest and reduce inflammation. The low fat diet went well, and the next day I was discharged (Christmas Eve). I was so lucky to be home for Christmas!
I am doing pretty well, but I have to be aware of what I am eating and drinking. I have to limit sugars and carbs, and mainly eat a low fat diet consisting of proteins, fruits, and veggies. So far, everything has gone pretty well. I still have a little pain at times, but NOTHING compared to what I felt when the incident began. I have to stop the Imuran of course, which is depressing because it is yet another medication that I am unable to take in the hope of effectively treating my Behcet's. I have tried approximately 24 medications or so, and the number of meds that are left to try are dwindling. And those that remain are very dangerous. I don't know what to do. I am feeling quite hopeless and out of control. It is so hard to not know whether something is going to help, whether I will get my life back, whether I will be able to work or get married or have kids. These thoughts are constantly running through my head. It is so stressful having a rare and chronic illness that is uncontrolled. It is becoming increasingly isolating and depressing. Although I try to keep my spirits up, at times it is just so hard to do so. I am thankful that I am recovering because that pain was absolutely awful. No one should have to go through that. My dad has had pancreatitis, and he agreed. All the doctors and nurses concurred, stating that it is an extremely painful thing to experience.
To wrap things up, I will follow up with my PCP to check my Lipase level and determine how I am doing. I will also have an appointment with my pain management doctor in Chicago Jan 7th. My Rheumatologist told me to rest and cancelled my appt for Jan 10th. If anyone has any ideas for me in terms of coping with everything, please let me know. I am always open to ideas or suggestions people may have to reduce stress or to continue to think positively. I generally try to find the positive in any situation, but the longer this disease persists this way, the more challenging it is to cope. Again, thanks for reading! I hope everyone had a wonderful Christmas holiday and was able to celebrate with family and friends. I am truly thankful for my family, especially my mother. She is always by my side, especially during difficult times like the pancreatitis. Thank you, Mom, from the bottom of my heart.
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