My Most Recent Flare and How I am Doing Now

 

My most recent flare happened about six months ago in February. It's definitely still very fresh in my mind and not an experience that I enjoy dwelling on. But it is a part of my story. 

Shortly after I started getting infusions (Remicade), I started feeling worse and worse. The diarrhea was coming back more frequently along with all the other symptoms of an ulcerative colitis flare. I was already not feeling very well before I started the infusions, but it didn't really help. I started taking more steroids as prescribed to me by my GI doctor. I started dreading going to work because of the pain and frequency of my bathroom trips. I remember just a few days before I had gone into the hospital for this flare, one of my student's guardians asked me if I had a date for "the next day," referring to Valentines Day. I had completely forgotten that it was Valentines Day because I was feeling so miserable from the oncoming flare. It confused me, which was a little embarrassing. 

Valentines Day I spent at home, sick in bed for the most part besides dragging myself to work for the one student I had that day. My brother and dad were very sweet in bringing me some flowers to cheer me up that day. The next day, I get an email and a call from my GI doctor telling me to go to the hospital. I had been keeping them updated about the severity of my symptoms. This time, however, they sent me to the hospital with a note telling the hospital to admit me. The past two flares prior to this, the hospital did not take me because I was "well enough." This time, I was admitted because of the GI doctor's note.

I almost went back home because the nurse was not that great in the ER and didn't seem to care all that much to check on me or give us a time on when I would be admitted. I am so glad I stayed though because this was by far the worst flare I've had. I was in a miserable amount of pain; it was almost unbearable. I was losing a lot of blood during my bathroom visits, I couldn't really eat, and I was extremely weak. I'd say the worst of it was the pain though. After I got admitted into the hospital, I had an IV in my arm constantly pumping steroids and fluids into my arm keeping me hydrated and managing the inflammation. The doctor came in that evening and told me to get ready for a colonoscopy for the next day in the morning.

Now this, the colonoscopy prep, was the most pain I have ever been in so far. I was already having constant diarrhea and now they're having me take a laxative... which of course made it worse. They told me not to eat until the next day, which was not a problem because I was already not eating. They brought in this gigantic jug of what looked like water and told me to drink all of it. This was the laxative. It was not the nice laxative that tasted like flat soda that my dad had bought for me for my first colonoscopy. This was the nasty stuff. It tasted thick, salty, and sweet. I drank about half of it and then the doctor allowed me to stop.

When that stuff started kicking in, I felt like I was basically being constantly stabbed in the gut while having the worst cramps of my life. The nurses kept coming in trying to check on me, but I just couldn't leave the bathroom. Finally, I just let one nurse come in because I was feeling so miserable and they injected me with morphine. Oh my goodness, it was the most wonderful thing. After he gave me the morphine, my whole body tensed up and then relaxed and all the pain went away. The downside was that I couldn't hold myself up, but my mom was there to support me. My mom was there the whole time I was in the hospital, and I am so extremely grateful for that. I don't know how I would have managed without her there with me, not just during this flare, but all of them.

I was at the hospital for a week and missed a week more of work after I got out because I was recovering. The whole week I was there, I had steroids being pumped into me which made my body swell up. If you ever see me now wearing anything that shows my legs, you can still see the stretch marks from when I swelled up from all the steroids. Even my hands swelled up to the point that I couldn't really wear my engagement ring for a while. After I got out of the hospital, I could barely walk without support, couldn't dress myself, and couldn't bathe myself for the first few days. 

My mind was foggy for about a month and a half because of the pain medicine I was on when I got out of the hospital. It made my vision blurry, and I couldn't really think or talk well because it almost shut down my mind when I would take it. The medicine that would do this to me was called Tramadol. It definitely helped a lot with the pain, but it hindered my ability to function. I remember just staring at a wall in my bedroom for hours because I felt like there was really nothing else I was able to do. 

I could go on and on about all the details and how my first day back to work went and how I struggled as I recovered. But I won't talk your ear off.

The main thing is that it was awful, and I am still recovering to this day but am mostly back to normal now. The swelling has almost completely gone away, I feel well and can eat pretty normal now, and I can move around really well. I still need to watch what I eat and don't have as much energy as most people in their 20s have. But I feel good now. As of now, I am on Rinvoq and the tests I have taken recently show no sign of a flare. I have been taking Rinvoq since about April and it seems to be working very well so far. 

The only things that remind me that I have the health issues that I have now is that I still have mildly uncomfortable bathroom visits every morning, I get tired a little too easily, and I do still have to watch what I eat. I know this was a longer post, but if you read this far, thanks!