Weird Health Wednesday - Painless Pancreatitis

Welcome to Weird Health Wednesday!

Today's topic of weird health is concerning the issue of Pancreatitis - with no pain.
As I have mentioned (ad nauseam), each person's experience of an illness or symptom differs in some way. People react differently to medications, people have different emotional, physical, and physiological reactions to every kind of stimuli. Even symptoms that are thought to be universal have exceptions.

This one is an exception to what is widely considered universal. I have even been told, in the past, that it is impossible for me to be suffering from Pancreatitis if I have no pain.
Ha.

I have had Pancreatitis dozens of times. Most often mild, but I was hospitalized for five specific, and nearly fatal, episodes. I was eventually diagnosed with Recurrent Pancreatitis by a Pancreatic Specialist. With that said, the five hospitalized episodes were separate from the milder episodes. It is possible that the milder episodes were actually triggered by the Hereditary Angioedema, which could be the reason why the inflamed and/or swollen pancreas symptoms coincided with my menstrual cycle and female hormones. That is a topic for another day.

The episodes of concern today are the five episodes that were the result of an allergy/intolerance to medication. Now, pancreatitis is not exactly a common diagnosis of an allergic reaction, which is why some physicians prefer to call it an "intolerance". Nevertheless, it makes it so that I cannot take these medications because of the deadly risk they pose.

Pancreatitis is usually diagnosed based on primary symptoms, then followed up with bloodwork to check pancreatic enzyme levels. There are two types of measurements that can be made to check the enzyme levels. One measurement shows that normal levels should be between 0-60. Another measurement shows that normal levels should be between 0-300.
For the first four or five years of suffering from Ulcerative Colitis (and then Pouchitis and Crohn's following surgery), the latter measurement was used most often.
Now, in order to check the bloodwork, it was normal to expect the following symptoms:
1. Pain in the upper abdomen (just below the ribs).
2. Severe pain that also goes straight through to the back, at the same level.
3. Fever.
4. Severe nausea.
5. Vomiting (vomiting bile is a tell-tale sign).

I would like to point out that health professionals are taught that without pain or fever, the likelihood of pancreatitis is miniscule. Without pain, fever, and vomiting bile, it is 'obviously' another issue...

... In most cases.

So therein lay the problem.
I never experienced pain from pancreatitis until it was too late to get ahead of it. MY telltale symptoms were nausea that seemed to come directly from that upper abdomen along with nausea and eventually vomiting bile. The nausea almost felt like pressure rather than any sharp or burning pain. I don't think I ever experienced the back pain associated with it.
The first time I remember it happening, I had left the Children's Hospital, starting a new medication. I had had some strange reactions and experiences already, so we decided to stay in town near the Children's just in case. We got a hotel, then went out for dinner, to Moxie's. I had pasta with garlic bread.
Now, if you know anything about Pancreatitis, you'd know that carbohydrates are the worst thing to eat. They can make the pancreatic enzymes shoot up rapidly.
Of course, I had no idea my body would respond like this to a medication. All I knew was that I felt worse than usual (which was already pretty awful). I got more and more nauseated, then I puked in a bag. Green and yellowish vomit. Completely liquid. Disgusting.
We called the specialist on-call, and he instructed us to keep the bag and bring it in with us to the ER.
We drove to the Children's ER immediately.
Diagnosis: Pancreatitis. They could diagnose it just with the bile in the bag. They then did bloodwork.
From 0-300, my lipase reached something like 1357. Yeah. Not good.
The weird thing: I had no extra abdominal pain where I should have been having pain, nor did I have a fever.
Actually, let me rephrase that, I did not have the common measurement of a fever.
What we found out later is that my normal body temperature usually sits at 2-3° below what is usually considered normal body temperature. So when I feel feverish, my body still reads in the normal range, if my temperature changes at all. HAE presents certain restrictions for body temperature. 
But that's another story for another day.

Back to pancreatitis.
I was hospitalized and put on fluids for several days, immediately removed off of that medication, and gave my system a break.
Then they tried a new medication, and it happened again. And then again.

The first time was from Pentasa. The second time was from Salofalk.

The third time was from Imuran.
This time it was even worse.
I had just started Imuran. I mean the night before it happened, I took a dose, then in the morning I took my second dose. 2 doses. That afternoon I felt awful. I felt worse than usual, which again was already pretty awful. I had found my stride with some coping mechanisms, so on my worst days I found it uplifting to get up, get dolled up, and go out. So I went shopping. Or tried to. My mom and I were walking around trying on clothes and looking at random things, when I just kept getting worse. My posture became more and more slouched. I kept having to slow down to a sloth's walking pace or slower. I could not eat. I could not drink. I was so nauseous I could barely move. I couldn't even really speak anymore I was so weak and nauseated. All I wanted to do was puke, but I had nothing in my system.
And then I felt it. This familiar twinge of pressure and pinpointed spot of nausea. I told my mom that we had better go to the ER.
So we did.
They checked my lipase - within normal range! From 0-300 it was at 246.
I was given Gravol and sent home.
Okay, maybe I was wrong.
So I waited a while. It did not improve. We went back in. Lipase - 267. Sure it was rising, and I knew, I felt it in my gut that it would get worse, but without the proof, they would not believe me. We went in a THIRD time a couple of hours later. This time it was over 300, but only just.
I was again given Gravol and sent home.

Was I wrong? Did I totally misjudge my symptoms? Am I being paranoid? Am I imagining things?
That evening, I actually don't remember if I took my Imuran or not. I would have to look at my old records. Knowing me, I would have likely skipped that dose just in case I happened to be right.
I never did get to sleep. I was so nauseous I could barely stay still and stop crying, let alone sleep. But still no pain. Still no obvious fever.
And then it happened.
Around midnight - I finally felt like I would vomit, and I did. Bile.
Bile and blood.
Bile and blood was spraying out of me from every which way. My parents called an ambulance. I was sitting on the throne holding a bucket when they showed up. They got me on the gurney and into the ambulance. They looked terrified. I managed a smile and a joke... and then asked them for a bedpan. Not something I wanted to explain to two cute EMTs - who were new, by the way. One even said he had never seen anyone so sick.
Now usually when you see an ambulance with the lights on, they are speeding past everyone. Not this one. Not that night. I could feel every single bump in the road, and every little bump or swerve or break or acceleration made me puke more. So, to try and avoid more bloody-bilious-vomit, this ambulance went between 10-20km/hr the entire way to the hospital - slow and steady.
We got to the ER, they set me up with a commode, they took samples of everything, and did bloodwork. We explained that we were almost positive what the issue was, so they checked my lipase levels. From 0-300, my lipase enzymes were at 4556. Four thousand five hundred and fifty-six.
Had we left it longer, had I taken any more of that medication, my pancreas could have burst damn quickly. Game over.
Luckily, I got there in time.
Guess what?
Still, no severe pain. No real fever.
Pressure, nausea, chills, and a medical history that now included pancreatitis. That's it.

The fourth time was with a medication called 6MP, and had a similar result to what happened with Imuran. The difference this time was that when I went into the ER and my lipase was only about 259, I told them that I would stay in the waiting room. I knew what was coming, I knew what would happen, so I was stubborn and refused to leave. I wanted to be monitored.
Sure enough, my lipase went berserk and I stayed there.

The fifth time was a whole mixed bag of issues. It was after surgery. I had JUST gone home that afternoon. I was discharged, we stayed near the hospital for a day or so, then went home, thinking things were fine - taking the post-op medications I had been prescribed.
I got that old familiar set of symptoms and went to the ER. Unfortunately for me, my lipase was still under 300 - still within normal range. Now, because I had just had surgery (including a PICC line that they had to try several times to get right), I had track marks all over my arm. One of the nurses kicked my parents out and berated me for being a heroin addict, despite my protesting. I tried to explain, but she treated me like a subclass human. When the doctor came in and my parents came back, we explained my recent surgery and to please call my surgeons and specialists for what I should do. The doctor left the room. When he came back, he ensured me that everything was fine and that it was normal to feel the way I did. He SAID he spoke with my surgeon. He sent me home with Gravol.
A few hours later, I was worse.
This time, though, I refused to go to THAT ER. I told my dad that the only way I would go back to an emergency department is if we drove the nearly 3 hours to the Children's Hospital. I could not bear to be dismissed as a liar and a drug addict again. Not again. Not after all of this. So what did we do? We drove. I laid in the backseat counting every bump in the road, in absolute agony, because I could not bear being treated the way I had.
When we got to the Children's, I was immediately brought to the back, given an anti-nauseate, and taken care of. The medication was pushed in a little too fast and it made me puke - but I was so grateful that I was able to vomit finally after about 7 hours of unbearable nausea that I thanked the nurse, profusely, for making me puke.
We had a good laugh about that one.
And?
It was pancreatitis, again. My lipase had gone well over 1000, again, I had to be hospitalized for several days, and we gave up on certain families of immunosuppressant medications that we had previously tried. In addition, the doctor in the ER I had seen in my hometown had NEVER spoken to my surgeon. He had not called.

Pancreatitis is a biatch.
It is even worse when you do not present with the common telltale symptoms. Although it is beneficial to have less pain than expected (or no pain at all), when you present without the symptoms that help a diagnosis, it can make the process much longer and much more difficult than it should be.

There's my weird health Wednesday story.

As always - Stay strong and remember to advocate for yourself.