Blah. This colitis update isn’t going to be a fun one to write.
Ok, so let me catch you up to speed”¦
- June 2011: First diagnosed with UC after a bad flare. Get better. Stop taking meds.
- February 2012: Second flare. Get better. Stop taking meds. (Clearly, I don’t learn.)
- July 2012: Third flare. Stay on meds this time, but I become steroid-dependent. Go on and off steroids to control flare symptoms for the next 14 months. During this time, I try all sorts of things to fix myself with no luck.
- September 2013: Get pregnant. All UC symptoms go away for 9 glorious months.
- May 2014: Minor flare. Try all the usual 5-ASA drugs with no luck and eventually go back on steroids.
- June 2014: Give birth. All flare symptoms go away.
- July 2014: Start flaring again. Do the usual med game with no luck and eventually go back on steroids.
Since July, things were pretty great. I started at 10mg of Prednisone and slowly tapered my way down to 2.5mg without any issues. I was even at 2.5mg for 10 wonderful days. I actually thought I was going to get off steroids once and for all. Unfortunately, right when I was about to starting taking the 2.5mg every other day, I started feeling the typical UC symptoms. I hoped and prayed they’d go away, but things only intensified, so I’m back at 10mg of Prednisone. Unfortunately, it isn’t doing much, except keeping me up at night, which, with a newborn, means I am not sleeping at all. Basically, things are really crappy (pun intended) right now and we’re looking into more “intense” drugs to get things under control.
My doctor thinks Remicade is the best option for both me and Quinn, mostly so I can continue breastfeeding. (I checked with Q’s pediatrician about Remicade, and she said it was okay too.) I’m really scared about taking such a hardcore drug and worry so much about the side effects (leukemia, Lupus). And, truthfully, I wasn’t totally on board with this option until talking to my doctor’s Nurse Practioner, Meg, on Tuesday.
Meg is an awesome woman and totally straight-forward. She’s not someone who sugarcoats things, and I love that about her (and people, in general, like my husband, who will tell me if my breath smells like “cat nuggets” because that might have happened the other day). Meg and I started talking about trying the usual arsenal of drugs that I’ve tried a million times in the past. I knew deep down they probably wouldn’t work, but I didn’t want to take things up a notch with Remicade either.
I was so frustrated with being sick all the time and nothing working to get me 100% well, so my voice started to get shaky. I was on the verge of crying, and Meg saw that I was getting upset, so she looked at me and said, in the nicest way possible: “Your normal is not normal.” Basically, living the way I was currently living was no way to live. Life could be so much better. I could be so much better. Of course, her saying this immediately made me burst into tears because I knew she was right. This disease makes me so unhappy, and I could get healthy once and for all, so I am finally going to try the Remicade route.
As I mentioned above, Remicade is an intense drug, so before I can start it, there are a few things we need to do first. I had a bunch of blood work done, Meg put in a prior-approval with my health insurance company (Remicade is expensive), and I’m having a colonoscopy next week. So, it looks like this is really happening. I’m mostly okay with it all, but I’m scared. And sad. I never really thought of myself as sick person. Maybe it’s the fact that I have to go to the hospital every 8 weeks for a 3-hour infusion for the rest of my life (or until Remicade stops working). I dunno. Maybe once I’m feeling better, I won’t think this way anymore. (Side note: Hopefully, Remicade works. There’s actually a somewhat high probability it won’t work at all and we’ll have to look into other options.)
So, yea. Tuesday wasn’t a fun day at the doctor’s office, but, thankfully, I had these two handsome guys to keep me company and give me hugs when I needed them.
Ok, so all of that was kind of depressing. Sorry. BUT, my day got a whole lot better after leaving the hospital!
After a long morning at MGH, Mal and I were starving. We thought about grabbing lunch somewhere close to the hospital (Anna’s!), but then we remembered the potential rush hour traffic, so we hit the road and grabbed lunch closer to home. We ended up at the Rustic Kitchen, which is one of our favorite places with outdoor seating. It was a beautiful afternoon, so we took advantage of the weather and snagged a table outside.
As soon as the bread and white bean dip arrived at our table, Mal and I totally housed it! We were SO HUNGRY! Haha!
For my meal, I ordered a salad with grilled salmon, which was delicious and just what I wanted.
After lunch, I headed out for a quick run with Kerrie. Over the weekend, we made plans to run together on Tuesday afternoon, but I almost canceled on her. My doctor’s appointment was so emotionally draining for me, I really wasn’t in the mood to run. I honestly just wanted to curl up in bed and cry.
Just when I was about to tell Kerrie I wasn’t coming, Mal encouraged me to go and reminded me that running would likely make me feel better. I knew he was right, so I got dressed, hopped in the car, and met Kerrie for a 3-mile run. Maybe she needed a good run too because the two of us ran fast and hard, and it felt so great to get moving. I felt a zillion times better after sweating it out. Hey, sometimes you just need to make yourself do what you know is good for you even if you don’t want to do it.
My day ended with One Pan Roasted Sweet Potato and Black Bean Enchiladas and a glass of (much-needed) wine.
Questions of the Day
IBD peeps: How are things? What got you into remission? Any Remicade experiences you want to share?
Everyone else: Please tell me it’s going to be okay. Thank you. You’re the best.