Listening to my body – Part 2 (B sides)

I’m not sure why I thought this would be the end of my journey – a perfect harmony of data points that would lead me to become a normal human being once again. It started out as if everything was happening in tandem like the parting of the sea, but no, not quite that easy. Here’s what happened.

After I met with Dr. E and Dr. C, I went home thinking maybe the lower pain could be eradicated with this ongoing treatment of injections, and the upper pain could simply be due to one of two things: the learned pain or the pancreatitis as a direct result of Entyvio. Either way, it would be easy to try out both theories and go from there.

On Friday January 18th I went to the clinic to receive my Entyvio infusion – the first of my 4 week interval injections. I was right on time, with needle in vein right at 2:30. Nothing unusual about this appointment and no reason for alarm that I was feeling particularly sleepy as it was nearing the end of a busy week. By 3:30 I was back at home, finishing up my day and looking forward to drinks with Greg and some friends. We left the house at 6:45, had our first drink in hand by 7pm, and … by 9:30 I was tucked in bed with a pain level of 8, a tramacet in mouth, and the heating pad on my belly. Pancreatitis came knocking on my door that night, and it almost seemed too good to be true that Dr. C’s theory was coming to fruition so readily. Unfortunately we hadn’t put anything in place for me to go get any blood work done to prove out the escalation of pancreatic enzymes, and it was nearing the middle of the night. On Saturday morning I called and left a message with Dr. G to let him know the pancreatitis, deduced based on previous symptoms, erupted 7 hours after my infusion. I don’t know why, maybe because of how drastic the pain was, I continued to take tramacet rather than any other pain medication. In part it was helping subdue some of the pain but mostly it was knocking me out so I didn’t have to endure this anymore. Saturday was a crap shoot.

By Sunday, with no relief I decided two things 1) I was going to switch to Naproxen (cus why not) and 2) I was going to be all better by 5pm. The naproxen surprisingly was helping a bit more than the tramacet, but not enough to throw a party. Sadly it wasn’t knocking me out in any way so I endured the pain by being awake. Deep down though, both Greg and I were kind of happy that the dots were being connected for us and one theory was being illuminated over the other. This could be a quick end to my journey. Then at 4:15 Greg hollars “don’t worry you have 45 min til you’re all better” (gotta love his witt). I got up, went pee and…. HELLO PERIOD! FML.

Not only was this annoying as I shouldn’t be getting my periods anymore but this totally just screwed up the entyvio theory. I was back to square one.

As I lay in bed, I started to think about how to describe the pain in each of these areas and was going to pull out a sharpie and start drawing on myself. Instead, I decided to sketch Miss Sassypants over here.  Ok from the diagram I want to point out a few things.

 

  1. When I get pancreatitis, it LITERALLY hurts on my pancreas. But I noticed that when I get my period my pain is less to the right side (where my pancreas is) and just below my ribs in the center. Looks awfully like my diaphragm but Dr. E says it wouldn’t necessarily hurt there. In any case, the pancreatitis pain and the ‘period’ pain are so similar.
  2. However, both those pains are significantly different (though close in proximity) the dull ache I get in my upper colon when my colitis is flared (or I’m due to get my next infusion).
  3. Note the base of my colon is so close to my reproductive organs so while they are very distinct organs the pain often feels a lot alike. When I have my PERIOD and I have poopy problems, it’s hard to tell whether my colon is aching or whether my ovary is angry. When Dr. E gave me the injection to stop the pain down there, it was effective for a few days but it was acting on the nerve, not on any physical organs. Thus with my period my ovaries started hurting, and with the pancreatitis wreaking havoc on my digestive system my lower colon was inflamed. Its currently hard to tell whether Dr. E’s injection is helping right now or not.

 

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