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Tapering Off 40MG Prednisone After A Severe Crohn’s Flare

Hello from Arizona!

I’m finally completely tapered off of prednisone. YUS! 

I’ve been on Remicade almost 2 months now but have been seeing blood in my bowel movements again and I have some other symptoms as well. When I decided to take this trip I felt like I was ready to travel here to Arizona with minimal issues but that has not been the case. when I think about it realistically it hasn’t been that long since I got out of the hospital and I was there for 6 weeks. It will take more time than this for my body to recover but I’m impatient! NOT to be confused with inpatient which is what I was a few weeks ago. Heh heh. Get it? 

I was in the hospital for 6 weeks and was put on IV steroids (Solu-medrol), Ciprofloxacin, TPN, and Remicade and then came home tapering off 40MG's of prednisone

Sitting on a large rock on a mountain while hiking in arizona
Did some hiking in Tempe, Arizona with a new friend and took time to soak in how wonderful life is outside of the hospital.

I am gaining a little of the weight I lost back though which is good. When I arrived in Arizona a couple days ago I was feeling decent until last night and it sucked because I’m staying with a friend of mine that I’ve known for many years online but have never met in person. I didn’t want her first experience of spending time with me to be as it was.

so much pain!

I could barely sit up and I felt terrible because I wanted to spend time with my friend but I ended up just going to bed real early because I couldn’t handle it. Sometimes I’m able to fake feeling decent but other times I just can’t hide it and last night was one of those times. I had to take some pain medication I’ve had left over from a couple years ago just to be able to spend a bit of time with her. Then of course I wasn’t able to fall asleep because of the pain and probably some lasting effects of being on steroids.

I shake my fist at you prednisone!

Traveling while feeling this bad sucks. I just want to lay down and curl up in a ball but I feel obligated to visit with people and do a lot. I don’t know about you but I like to be around my own house and my own bathroom when I am feeling this way. I think the reason for that is because of anxiety caused by all the disastrous experiences Crohn’s disease has caused me. I just feel safe and able to avoid emergencies and embarrassment when I am isolated to my house but that is not a good way to live so I try not to do that. 

I know I’ve only had 3 infusions so far but hopefully Remicade will help. Tomorrow is my last day of vacation and I fly home overnight. It’s been nice visiting with my Grandpa and Grandma, a couple of my cousins, and my Aunt K and Uncle J.

I will let you know how I am doing when I get back. How are YOU doing?

Sara

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