When I was 29 I started to have one of the worse flare-ups I have had to date. I could barely do any thing! I honestly would just go to work, home, sleep, repeat. At the time I had a little Peek-a-poo named Toby. He was such a high energy dog, he’d play like crazy! But when I was sick he would be such a good cuddler. I needed that so much at that point in my life. This flare-up came on fast and hard. I had to cancel all my plans and was in a waiting game again. I had been on Asacol since I was first diagnosed over 6 years prior and Azathioprine not too far after that. But now we were talking about having injections with Remicade. Since I was still young and this would be very expensive treatment that I would be on meds like this for the rest of my life my GI Doctor sent me to another specialist about an hour away for a second opinion. Driving an hour was just brutal with a “pooping disease”!!
To be very honest everything this time around was just brutal…. sleeping was so hard I was getting up every time I moved just barely making it to the bathroom. It was also December which means snow and crappy driving conditions. I’m very lucky to have such a great support system. Both my parents took off of work to take me to my appointments. We’d leave extra early so we could stop as needed for every appointment. Well after the initial appointment with this GI I had to come back for a colonoscopy. Wonderful, just wonderful!
Have you ever had a colonoscopy?! Well the procedure itself isn’t too bad. The night before just SUCKS! Yep that prep is the worst, drink some nasty stuff and shit all night! Plus I always freeze from drinking all those liquids. So one of the things I have found was sleeping in my bathroom with a little space heater blasting is the best. Now this time I had to drive an hour to have my colonoscopy done. At least I was able to make it there with a few stops but at least I didn’t shit my pants. The first coloscopy I had I was in a small town, had a hospital bed and my own recovering room. This time we were is a big city, I had to walk down the hall in my hospital gown on and tennis shoes. Then I had to crawl onto the operating bed. The doctor made a joke about just watching the procedure on YouTube. Next thing it was nighty-night to me….until….
I started screaming!!! It felt like they were ripping my insides out! It hurt so bad!! It was only 5 minutes left and they had given me a little more anesthesia but it didn’t work. It was finally over, they wheeled me back to the recovery room which had a bunch of beds with curtains between them and a nurses desk. My parents were sitting there waiting for me to wake up. Then it was back home only to wait for approve to go on new medication, Remicade.
The wait was so loooong…My dad was over shoveling my driveway when I finally got the call that I was approved by my insurance for Remicade but I had to wait a week to get my first injection. Another week!! It couldn’t come soon enough, I just wanted to feel better.
Remicade was a game changer. It took a few weeks but I was getting my strength back. All I had to do was sit about 4 hours every 8 weeks in the hospital hooked up to an IV. During this time the nurses would take my temperature and vitals starting every 15 minutes then to every 30 minutes. I had to take Extra strength Tylonal and Benadryl to help keep from having a reaction. It wasn’t too bad. My mom came with me in the beginning but once it became the new normal I went solo. Most of my therapy sessions I would bring something to do. During our busy season (I work for a public accounting firm) I would bring work. When I was studying for my CPP (Certified Payroll Professional) I would bring that. I found I was quite focused during my treatments and it kept me from just sitting and watching TV and getting tired. At first I would go during the day until the hospital opened their evening center. Then I would go about 4ish. I found out that I was the “one with the cute shoes” patient.
It actually wasn’t too bad having to go to the hospital for my Remicade. The nurses were always so nice and I would just take it as best I could. It didn’t pay to stress about it instead I would say “well I have my spa day” as the staff would be waiting on me during my therapy. At first I was able to order off the menu but eventually that would change but I would still get cookies or some sort of snack. I had been on Remicade for about 5 years before my next medication switch.
But that’s another adventure!
Good For You!!!! Important someone shed light on the subject matter. Karita Leigh Perdita