What does it mean for me to be in a flare? Generally increased bowel movements. I don't go into these details often because "you're not supposed to talk about poop" but this is my blog and I'll poop if I want to. I won't go into all the details on here about my disease, but for me, I generally go to the bathroom twice every morning when I'm healthy. Once right when I wake up and then generally within the first hour or two of being awake. When I'm in a flare, I can go up to 15 to 20 times a day. I was going about 7 to 8 times a day when my eyes first started acting up in September. It's controlled well by the steroids so I was going maybe 3 times a day. I keep track of this all in an app designed for patients with IBD.
I started to have some pain on Thursday. I thought it was just hemorrhoids/rectal pain acting up. When I was first diagnosed in 2002, my disease started as ulcerative proctitus, meaning that most of the inflammation is found in the rectum and last six inches of the colon. Over the years, it became leftsided colitis, meaning the last turn of the colon down is affected, and then to pancolitis, meaning my entire colon is affected. Since my disease starts in my rectum, pain down there is pretty common for me. So I didn't think too much about it even on Friday I was having trouble walking home from work. I just continued my Epsom salt baths, Metamucil cookies and prepH treatments, which usually clears things up in a few days. Since I wasn't having super increased bowel movements, I wasn't too concerned at first. As the weekend progressed, the pain got worse and worse. By about 5am Sunday morning, I could not handle it. My mom brought me to the ER. I don't think she thought I needed to go until she actually saw me in person. I have an extremely high threshold for pain. This was literally the worst pain I have ever felt in my life. Ten out of ten. The angriest face on the pain chart.
We got to the ER and they took me back right away. I couldn't sit in the chair in triage, because it hurt so bad to sit (or move). As we walked back to the room, I ended up starting to pass out and had to be wheeled into the room via wheelchair. They hooked me up to fluids and pain medicine, and started me with some prep to drink before a CT Scan. The CT Scan was really hard on me because laying on my back was agony. The girls in CT propped up my feet and I gritted my teeth and held my breath so they could figure out what was going on. It was a perirectal abscess. Horseshoe shaped and 6.6 by 6.5 by 7.7 cm is size. That is pretty large, if you're wondering. I needed emergency surgery to drain it.
I was in surgery by about 5pm and was back in the hospital room by about 8pm. Immediately after waking from surgery, I had less pain and agony. Still some pain, but so much less and no more pressure. I was hooked up to fluids and IV meds and my body swelled and I was up every single hour to call the nurses to help me to the bathroom so I could pee, which took more effort than you'd think. I honestly had muscle soreness like I had gone to the gym from lifting myself in and out of bed without letting my butt touch the bed. Want a core workout? I don't recommend this one, but it will work.
I spent two days in the hospital. I couldn't leave until I moved my bowels. That first movement hurt. A lot. I got home Tuesday afternoon. I'm happy to be in my own bed and my own bathroom. I've been resting mostly. Watching Netflix and reading and trying not to let my brain turn into mush. Lots of baths and showers to keep the wound clean and my muscles relaxed. I can go back to work when I feel ready, but it may be a few more days. I can't be away from my supplies and a restroom for very long. I can't lift things. Standing in one place for too long hurts and makes me feel woozy. I've been walking the halls of the Lafayette every few hours to keep myself moving. Each time after a walk, I generally lay down and fall asleep for a little while.
My body is tired and sore. I'm taking pain pills and antibiotics and steroids and eyedrops and a slew of things. I had to make a chart to keep track of all of my medicines. Mentally, I'm starting to get tired. I've had friends come and visit the last few days which has been really great. I've gotten cards and phone calls and flowers. I feel well supported and loved. But I can't help but be sick of this. I know I shouldn't complain. I know I am so lucky to have had this disease for more than 15 years and this is the first time I've had to have surgery, the first time I've even had to talk to a colorectal surgeon. The guy in the hospital room across from mine lost his colon on Monday. He spent the night before crying over the loss of 5 feet of tissue that was a part of him. My roommate in the hospital was a 90-something lady who was on TPN (tube feeding) and needed two orderlies to help her sit in a chair for an hour a day. I honestly felt a little privileged sitting in this unit, with my normal diet and ability to walk around. But still, this constant being sick, this struggle is a lot. And all I want to do is ride my bike and do yoga and feel healthy again. It's been 14 months since the lupus symptoms came. Fourteen months since I've felt normal. It's just been one thing after another for 14 freeking months. I just really need things to start changing.
Ok, enough complaining Ang. Here's a list of things I'm thankful for:
1. My roommate at the hospital was a blessing. She was the sweetest woman. We kept going "Hey, you ok?" "Yeah, I'm ok, you ok?" every couple of hours.
2. I have amazing friends who have come to my apartment to get me things while I was in the hospital, visited me in the hospital, have brought me food, sent me cards, and just been so supportive.
3. I am totally not gonna get hooked on pain pills because every time it's time for a pain pill, I think of how I can't become one of Mark Poloncarz's statistics in the Opiate Epidemic and I've honestly been taking less pain pills because of it. Thanks Mark!
4. My office is so supportive and has worked with me through all of this. And I don't have to stress about work...any more than I do normally (because I love my job probably a little too much.) But to know that their first priority is me being healthy is a huge blessing.
5. I can't lift things, but I live in a building with friends who work here, so I was able to ask one of them to take out my garbage today because I had some stuff getting stinky in one of the bags.
6. Being stuck home and able to read is far far, far superior to being stuck home and legally blind.
7. I MET ALTON BROWN TODAY!!! He was at the coffee bar in my building, Public Espresso. I guess he met them 3 years ago when he was last in Buffalo and came to visit today to see all the things they're up to. I'm so excited for my Public Espresso buddies and all the good things they have going on! #publicespressogroupie
This latest episode in my health is going to set me back a bit financially. Please consider donating to my GoFundMe if you are so inclined. For those who have contributed, thank you and I love you. Every bit helps. https://www.gofundme.com/cydtz2-angelas-medical-fund
Don't want to donate online? I also accept food, runs to CVS to pick up gauze, wipes and supplies, book and movie suggestions, and visits to keep me company! Your love and prayers also mean the world to me. xoxo
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