Well, it seems I failed you again on keeping you up-to-date at a decent time. It has almost been 20 days since my last column or blog post, and a lot has happened since then.
My last post, Entyvio Infusion #5 caught you up on most of November, so now I plan on catching you up through most of December.
Most of my month has been taken up by work, working every weekend for a month straight, a weekend off was much needed. We celebrated Christmas at CosmoProf and we’ve had hot cocoa nearly every day!
Now, I do get days off when I go to the doctor since there is no telling how long the VA will take. I have a few appointments scheduled for the future, and I had a couple this week as well.
I did get to participate in something I am very proud of this week. Cure for IBD, a Crohn’s and Colitis fundraising foundation, they have been raising money for research for almost 3 years (I think) now. The founder, Chris Pedicone, reached out to me because he knew I live in Kentucky. They were donating a large check, think Publishers Clearing House style, and he asked if I would like to go and help present it to the Cincinnati Children’s hospital. Of course, I said I would.
Myself, Philip and another friend of Chris’s whose daughter has Crohn’s, we presented the check, took some photos, and we even got to tour the facility and lab. We had hoped that Chris would be able to join us, but when he wasn’t, I made sure to print out a photo of his face to bring him with us in spirit.
I got to see some mouse colon and human colon samples, and the hospital itself was beyond high-tech. We were given Christmas ornaments from the Cincinnati Children Champions and I made sure to get a UDF milkshake since we were in Ohio.
With my eyes, I mentioned being farsighted and getting a prescription for glasses. I ordered myself a pair from Zenni’s and I had hesitation about them. I had heard that new glasses can cause a headache and being a migraine sufferer myself, I wanted to avoid any discomfort if possible. I was also worried I’d look awful in them, too!
I found a pair that I liked specifically for the coloring. Green with purple, and a hint of black and white stripes on the rim, I call them my Beetlejuice glasses but some call them my Joker glasses due to the green hair. I even got them engraved. I’ve worn them almost every day since getting them, I made sure to take my Imitrex before I did the first few days.
If you remember in my last post, there was a scheduling dilemma with my colonoscopy. I was told I would have it December 8th but when I checked in for my infusion there was no scope scheduled. I had to schedule it for the 20th, and there seemed to be a dilemma with that appointment scheduling as well.
I got calls from the VA earlier this week which really stressed me out, I was planning on my bowel prep for Tuesday and they called me on Monday to tell me that they may not have enough doctors.
I was blunt and somewhat rude with the girl, even though I knew it wasn’t her fault, but I was not going to wait another 2 months for this scope when my doctor wanted it done before Christmas. I told her there was no way in hell I wasn’t having this colonoscopy and that she could expect me there at 1 on Wednesday no matter what.
I ended up calling my GI doctor and telling her the dilemma to make sure that I was having the scope done. I mean, I was supposed to take my bowel prep the next day, so it was pretty bad timing on the VA to call me and stress me out about whether or not I was having it.
Dr. S with GI called me back and assured me that I was going to have it! So Tuesday night of this week I got to enjoy some lovely bowel beep. The Golytely that was sent from the VA was unbearable but I did take the pills of Bisacodyl they sent with it.
I ended up making a late trip to Kroger because a lady online had suggested Crystal Light flavor packets and anything was better than nothing. I got a few flavors to change the flavors in between glasses and I can say that it helped.
I swapped from the Golytely to some Miralax that I already had at home and I drank glass after glass until around 1am. I got back up early, around 6, to start round two.
With no coffee or food, I was supposed to wait until 1 for my scope but the VA called and had me come in a few hours early. I was home and in pajamas by the original time because we got done so quickly.
I went in, they had me give a dreaded pregnancy test, it is guaranteed to be negative but they are required to test. They had me change into a lovely hospital gown and get prepped in the hospital bed.
The nurse in charge of starting my IV, well, I’m still debating on what to do about her. She got my IV started but she probed my arm. She moved the needle when attempting to get it started and when I told her she was hurting me, she replied: “Thank you!”, as if her hurting me was a compliment.
I flat out told her she was rude and that I knew this wasn’t the VA’s policy on blood draw. I told her that I was a phlebotomist and that it should not feel this way to get an IV started and that her bedside manner was extremely rude.
She told me she was a dentist and later told me that she didn’t want to hurt me but by this point, I was already irritated with her and wanted to be done with the entire procedure.
When the anesthesiologist came to my bedside, she saw my red IV area and noticed there was also a kink in the tube. She had to remove the tape that was holding it in place and redo the placement. I’m already allergic to the adhesive, so this meant I would have even more affected areas in my arm.
The rude nurse came to my gurney and tried to lie to the anesthesiologist, telling her that my puncture wound from the IV was red and inflamed because of the tape, an allergic reaction, but specific this area had not been touched by tape, the irritation was here fault. I made sure to note that to both of them, the liar and the anesthesiologist.
I was asked questions before and I was asked if biopsies could be taken for an IBD study. I knew biopsies would be taken for my doctors so I thought it would be okay for them to have some, too. They told me they would also take blood from me but they would try to do it while I was asleep.
The doctor performing the scope, Dr. B, he asked about my Crohn’s disease and medication history. He asked if GI had a plan in case the Entyvio didn’t work, and when I mentioned that the VA would try Remicade again before starting Stelara, and he told me he wouldn’t let that happen.
He did mention that my reaction to Humira was not a normal one, that the anti-TNF medications, like Humira and Remicade, they were probably no good for me since I had such a negative reaction.
Anyway, they wheeled me back for the procedure and before I knew it I was drifting to sleep and then I woke back in the same prep room. I was given my clothes and walked to the bathroom to get changed.
Other than the bowel prep, waking all air filled and bloaty and sore is no fun either. Every move, every step, every bump or turn off the car, you feel it. They had warned me, like always, that there would be discomfort and tenderness with some bleeding from the biopsies, but you forget just how bad it is until the next scope happens.
Today, I had off work to recuperate and feel better, so I made sure I spent time writing, too.
In the next few weeks, the Christmas and New Years holiday will catch up with us, and another year will have come and gone.
To start off the year, I already have four appointments scheduled so far. I’ll see MSK about the Ganglion cyst on my wrist that I call Lumpy. I’ll see the surgeon for a consult, I’ll have another infusion if the doctor says so, and, I’ll meet a rheumatologist for a consult, too.
Otherwise, I’ve still been writing for IBD News Today and my articles with Everyday Health have been published, discussing stress, the holidays, anger and Crohn’s disease. See article one and article two.
I may not see you until next year, so enjoy your holidays! Merry Christmas and Happy New Year. For me, It Could Be Worse.
And as always, any information you’d like to offer up about Remicade infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!
CURE for IBD:
For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds WE raise will be allocated to IBD research for a cure. That’s right, 100%!!
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