These past two weeks have been a whirl wind. If you follow my instagram account you probably already know. If you don’t well:
- My ulcerative colitis was getting worse again so we are now on treatment #6
- I got in a car accident
Let’s start with the car accident. Life happens so fast! I posted on here on the 19th and literally two days later I got in the accident. WHY LIFE.
I had planned on taking Thursday, Friday and Monday off prior to it all happening to focus on giving my body some time with my UC. This was because previously I had gotten really sick at work on the Tuesday, and ended up going to the emergency to make sure it wasn’t the flu. Of course it wasn’t, just a bad flare up. But instead of relaxing all that time was focused on my injuries from the accident. While it wasn’t my fault, I still walked away pretty banged up. My little baby has been written off and yesterday was officially towed. I ended up getting whiplash in my neck, back, and my jaw AND have a hairline fracture across my right knee cap. So as a result I have been off work since.
While my mom has seen the silver lining as this being a blessing to get more rest, I have been going out of my mind. I don’t quite know how to relax. I am so used to being busy. And it’s my right knee! I can’t drive, so I can’t go out, and I have to rely on people. It’s a sucky situation. If I didn’t already feel like a burden I certainly do now.
But it is what it is. I’m doing physio, have exercises, get around pretty well now with my crutches. I even got a fancy water pillow from my physio therapist. I find out Monday how my healing is going and how much longer I may or may not be out. I’m hoping I can go back soon to modified work. I miss working.
Now for my UC.
I had been struggling the last month so I knew something was off. Again, it was the age old tale of not being sure if it was prednisone or my UC. Well after enough tests and time it was my UC flaring up bad. My inflammation markers were off the charts and my symptoms were just not functional. I’m going to assume it was bad because my doctor got that sheepish stressed out look he gets when he feels cornered.
So we sat there and seriously talked about my options. Prednisone was something he wanted to avoid for a little while if we could because I had been on it for 6 months straight. I was increasing my risk for serious health concerns such as diabetes, osteoporosis, glaucoma, ect. Entyvio and I just couldn’t make it work either. Stelara is an option, through clinical trials, but he wanted to keep it on the burner. Surgery was something I brought up. I discovered that it was not that he was against surgery, but just not willing to cross that road right now if we could avoid it due to my age and health history. If I were to get surgery, my entire colon would have to come out. I knew this. What I didn’t know what that having this surgery decreases your fertility by 30%, which for a normal person may not be a big deal. However, I have endometriosis, so my fertility rate is lower than the average woman. If we went down that road I would have to consider the possibility that I might not be able to get pregnant. It was recommended to get a fertility count done and see, but we decided to explore other options for now.
So we have turned to Remicade. Initially we veered away from this because it works similar to Humira, which did nada. But hey, it has worked for a lot of people I know. I’m just on the highest dose you can get. I get my three induction doses every week back to back, instead of doing the standard week 0, week 2, week 4, ect. After that I will be getting it every 4 weeks. In addition to this I am back on Cortiment, a lower and safer steroid, weekly methotrexate injections, folic acid for the methotrexate, and a SUPER FANTASTIC liquid steroid enema. Just kidding, I actually hate it. Luckily that is only for a week.
But actually, what devil came up with liquid enemas. I thought Salofalk was the devil, but I was dead wrong. First of all the instructions are shit. They tell you to squeeze it and roll it like a toothpaste tube. DON’T. I mean maybe it doesn’t help that I have little movement in my back right now, but I did this and it accidentally unrolled, so when I went to squeeze it again, instead of medication, I basically shot myself with a bunch of air. Holding it in after that was a nightmare. You’re supposed to just try and sleep after, but all I could do was panic that I was going to fart and all this liquid was going to shoot out of my ass and all over my bed.
Delightful image. My poor boyfriend.
But here we are. A crippled gimp, hobbling around, getting her ass handed to her by the amount of medication I am taking. Remicade and fatigue are real people. I have not experienced it to the degree I have now. But my moonface has gone down! In fact my body weight is going down because of the fatigue and nausea. But we are drinking shakes and snacking a lot to try and keep what we can on. Weight fluctuation is frustrating.
But we will get through it as we do. I will figure out how to better inject myself so I don’t bruise like a peach, I will figure out how to better occupy my free time, and I will hope and pray my body figures out itself.
But for now I am off. I hope all has been well with everyone else!