Since my last post, about my ganglionectomy, its only been six days but I wanted to catch you up since it’ll be another week before I have a day off to sit and write.
The days following my surgery were spent in pain. I had originally planned on going back to work that Thursday (2 days post op) but I was having such bad pain with any minor movement that I didn’t return to work until Saturday.
Saturday was painful, I wanted to go home the entire day. I spent most of the workday at the cash register and working with one hand is harder than you think. I could barely lift the cash drawer, bag items and even making change was an ordeal. My hand continued to swell and ache, I had no knuckles on my left hand! I worked the weekend and prepared for more doctors appointments this week.
Including last Tuesday and my surgery, I have had three more doctor visits. And including last Tuesday, I have had one blood draw and four IVs (three successful). The coban tape they put on your injection site is the worst. I finally got to change the dressing on my wrist after72 hours, and thankfully I have family that can send care package of gauze and supplies!
Monday, I had two doctor visits. First, a consultation with rheumatology. Then, my loading dose infusion of Stelara.
With rheumatology, I’ve been trying to see them for a while. I’ve suffered all over body pain, allodynia, on and off for years. I’ve had night sweats and I seem to always run a low-grade fever. I’ve dealt with many other symptoms and I had just blamed everything on my Crohn’s disease but I had a feeling it was more.
I went into the appointment thinking Fibromyalgia was the cause, and I was right. The rheumatologist listened to my symptoms, read through my extensive medical chart, and, they pressed on areas of my skin.
They agreed that I suffer from Fibromyalgia and ordered up some blood tests to check my thyroid and vitamin levels. Another problem that can’t necessarily be cured, but can be helped by medication and the doctor even suggested yoga and taking the days I need when I need them. This diagnosis makes so much sense but it is terrible that I have to deal with this, all the time. It is always something.
Since I already take Nortriptyline and Gabapentin, medications that can be helpful with Fibromyalgia management, we planned on upping the dosages. I’ll see my neurologist once I can get a follow-up appointment scheduled, and I’ll let them know these changes.
After this appointment, I went to the blood lab, for the orders that rheumatology put in and for my normal kidney and liver panels for GI. Then, I checked in at the infusion lab.
The infusion lab was packed full and I didn’t even get taken back until after 10, with the Stelara infusion drip not starting until after 11.
Of course, I brought my infusion essentials and got settled in during this time with my blanket and stuffed rectum plush, Harry Asshole. I took my migraine meds, Benadryl, Tylenol and Promethazine and waited for the infusion meds and for it to be over.
Since this is a new medication, my treatment plans changed. This Stelara infusion would be my last infusion for a while since the rest of the treatments are injections that I can give to myself.
Following this infusion, I’ll inject myself every eight weeks at home. I had to do this with Humira and I had prepared to do fertility injections in the past, so I plan on taking a day off for these injection days and I am comfortable being able to do this by myself.
After the infusion, I got to go home and see how the new meds would treat me.
I woke up Tuesday and I felt pretty sore all over, another allodynia day or infusion reaction perhaps. Even my rib cage hurt to breathe, it was going to be a long day.
I had to wake up super early for another appointment, this time for an MRE scan for GI to see my small bowel.
I didn’t expect to have to drink anything for this scan, I had hoped it was just an IV solution that was needed.
But, I was wrong.
I was given three bottles of solution and told to drink as much as possible. Tropical fruit punch flavors, yeah right.
I had to arrive at 630 but my scan was not scheduled until 8. I felt so tired, having to get up every day is catching up with me. I had hoped that I could sleep during this scan, but again, I was wrong.
I was going to have to hold my breath for certain times, and I had to stay awake for the scan, which was hard because I was already dozing off in the waiting room.
When I got ready for the scan, I knew I was going to get an IV for the scan solutions but then I was also told I’d be getting a shot in my hip!
The shot was supposed to slow down my bowel, less stomach movement messing up the imaging. When nurse got my hip out and swapped with alcohol, she realized that the needle was way too big.
The tech giving the shot had to search everywhere for a smaller needle, even having to go to another area in the hospital while I lied there with my ass half out where we prepped for the shot, my arm sticking straight up because the IV was already in place and I couldn’t bend at the elbow, and I was freezing to death in the cold MRI area. I was a sight to see, I’m sure.
After the shot to the hip, we could begin the scan.
I did end up falling asleep during the scan, I would wake up and be nervous that I was supposed to be holding my breath or breathing at the wrong time.
The scan took around an hour, and man I couldn’t wait to get home so that I could sleep. And that’s exactly what I did.
I came home after the scan, exhausted, and I slept the rest of the afternoon. From working the weekend to getting up for doctors and having scraps and my infusion, I needed a small coma.
I woke up, wrote my column for IBD News Today and began writing this blog post. It was so late in the evening, I’d have to finish it on Wednesday, today, after work. I am sorry it is after 10 when this is posting.
I will work the rest of the week, monitor my body after this infusion and I’ll continue to baby my wrist until next week.
Then Tuesday, I’ll have my stitches removed and see musculoskeletal (MSK) for a follow up on surgery. Friday, I’ll have another MRI, this time a scan on my right wrist to see why that hand is causing pain with use.
Let hope I start to feel better soon.
For Me, It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey. Please Like It Could Be Worse Blog on Facebook!
And as always, any information you’d like to offer up about 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%!!
IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
Previous Posts on It Could Be Worse:
Entyvio Infusion #5, Work, and Scheduling Appointments – Weeks 47 & 48
Crohn’s Disease Essentials and Emergency Kits
Hang in there. Crohn’s sucks. You’re a fighter.
Hope things are better for you. Sometimes you just want to catch a break from it all – would be nice that xx
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You are so right! Ditto!
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