On March 26, 2008, I went into an emergency hospital and said, "I believe I have Severe Acute Pancreatitis". The ER doctor laughed and asked if I was a doctor. I said, "No, but I can read. Please just do the tests." The tests were done. He came back and said I was fine. I asked what the numbers were. He said 60 was normal. I asked what my number was. He said that it was over 200... and that he'd be right back. He came back with a very different, less arrogant expression on his face and said I would be admitted into the hospital and taken off all food and water and put on an IV so my pancreas could rest.
That's probably an excellent example of just how hard it is to detect issues with the pancreas. I
was 39-years-old at the time. Doctors expect people with severe acute pancreatitis to be old men. Perhaps it was because I didn't fit this doctor's diagnostic expectations he so willingly chose to initially reject the idea that I had severe acute pancreatitis.
My symptoms were not typical. I had no back pain and my overall pain was limited. This is most likely because I had experienced pain earlier on and as the disease progresses the pain decreases... from what I've read. Therefore, the fact that I wasn't in pain was probably looked at as a sign that I was not a likely candidate for the disease rather than my disease had already progressed to such a dire state.
While I've never heard of the disease described in this way, my main fear was that when I drank it felt like the liquid cascaded over something in the upper middle part of my abdomen - like a waterfall. It felt as though the liquids were missing the area they were supposed to go down.
I had been reading the symptoms of pancreatitis for a few months. When my daughter would perform reflexology on my foot the pancreas was always sore. For a few months before my hospital experience I read about it and watched my body develop and react to the symptoms. A quite drinking a couple times but would inevitably forget or not believe that it was necessary for me to not drink alcohol.
I was in the hospital for 16 days until I was kicked out for bad behavior. The hospital was in France and a couple of my nurses didn't seem to be too partial to my American decent and I feel that triggers poor quality health care, as a result. At a certain point, I felt I would find a safer, less chaotic and saner recovery at home.
During much of my hospital stay my heart rate was very low. Too low. The nurses would gasp and urgently call for the doctor which I found rather unprofessional. Feel free to freak out but please leave the room first. I spent many hours day-after-day walking the halls - me and my IV contraption - to keep my heart beating.
Acute severe pancreatitis can stop other organs from working which can result in death. There is a very high mortality rate for acute severe pancreatitis.
As a result of the attack my lungs are permanently weak and when exposed to 2nd hand smoke they often feel like tissue paper. When I exercise or exert energy I am careful to this day not to overdue it. I have a fragile body that need to be treated with kid gloves and respect.
At one point, I was told I could eat a meal and we'd see what happened. That was the worse advice I could have been given. I'm not a guinea pig. Yet, that is exactly how this advice treated me. My body did not do well and I was then in severe pain and my recovery was set back
drastically.
Perhaps the reason I wasn't having pain outside the hospital was because I listened to my body and stayed away from things that hurt - like large meals. Or, perhaps I just drank more than I ate. Whatever the case, in my opinion, episodes like that are exactly what decrease the lifespan of someone who suffers from pancreatitis and is can cause a deadly attack.
When I went home I tried different kinds of foods but I really wasn't ready for them. Yet, I was hungry. Tea, coffee, honey and local honey, broth, tapioca pudding, fat-free yogurt, baby cereal and the like were the sorts of things my body seemed to fair best with.
Coffee was helpful because it would decrease my appetite making it easier for me to refrain from eating. On the other hand, too much coffee would irritate my system. So, I tried to find balance. Being hungry all the time sucked... but so did attacks.
I try to stay away from pain killers because I don't want to mask the pain. Rather, I want to know what is causing it and proactively resolving the issue and thereby dissipating the pain.
I believe that if I am in pain or have discomfort than there is the potential for greater harm to pancreas as well as other organs which I believe can cause scarring as well as decrease my overall life span.
I prefer to approach my chronic pancreatitis (acute severe pancreatitis does not always turn into chronic pancreatitis - so they say - but in my case, it did) holistically through diet, exercise and living a happy, stress-free life. I'm not perfect at it. But dealing with doctors was a nightmare while doing it on my own is joyful!
It's okay to be super skinny. It's better than being dead. Eventually it might be possible to put on weight. For now, just be happy your skinny, not dead. Skinny is much more attractive than a rotting corpse.
My thoughts on surgery are 'Why would I let someone cut something out of me that I might need later especially when they don't understand the disease'. Basically, for me, surgery is not an option at this stage of the game and probably never will be. A transplant I would consider.
I read a study that claimed half the people with chronic pancreatitis die within two years (most of whom die from alcoholism and diabetes). I've been alive and functioning well for much of it for well over 3.5 years. My goal is to live 10 years. Doctors don't have what I want... but search engines have been quite helpful in creating a game plan for longevity.
If you or a loved one is currently experiencing acute pancreatitis, I can only remember the fear, concern and devastation attached to that time period. It can pass. Don't drink. Don't eat too much ever. And for now, don't eat too soon. Be patient. Have faith. That is what seems to work best for me. Take it one day at a time and always remember that your body is your temple and without it, you're dead.
Enjoy your life. You deserve it!
