Sarah's Crohn's Blog - Just Started Stelara!

Sarah’s Crohn’s Blog is a series of journal entries related to Sarah’s battle with Crohn’s Disease. She was initially diagnosed with ulcerative colitis in 2010, but since then the diagnosis has changed to Crohn’s Disease. Anything referring to ulcerative colitis in these blogs was simply written before the diagnosis changed.

January 19, 2021

Today I got my IV loading dose of Stelara, the medication that I’m hoping will heal my Crohn’s disease. I will be giving myself a subcutaneous injection every 8 weeks from here on out for the rest of my life (assuming it works). If it doesn’t work, I only have one more medication option left. Stelara didn’t even exist when I was first diagnosed with Crohn’s disease, so my hope is that there are other medications in trial that I can turn to in the future if needed. I will have my ileostomy bag for at least 6 months before my doctor will do a sigmoidoscopy to check on things. If my rectum has healed, then that means I can get rid of my ileostomy. If it still has inflammation/disease, it means we have to adjust or switch medications. If nothing works, then I will have an ileostomy for life. Stelara costs over $12,000 per dose, and I am grateful that my insurance has approved it. I fear that if I lose my health insurance through work (which is a ridiculous $850 a month through COBRA since I’m on medical leave right now), I will end up on a plan that doesn’t cover the medication. My dependence on health insurance does not make me feel very secure, but unfortunately that is out of my hands.

In regards to my health, I am feeling pretty good. I still have lingering pain (more than expected) from my surgery from December 30, and I think that’s because it was an invasive open surgery (all my others were planned and laparoscopic). I am doing light activity every day around the house, but in general I’m sticking to sedentary activities like reading, watching online CME’s for work, playing online chess, and doing Khan Academy classes (I’m currently doing their world history and finance courses which are awesome!). I’m actually enjoying this quite a bit because I often neglect these activities in my normal busy life, and my brain is getting super stimulated. My Crohn’s pain is 100% gone and I’m not pooping my pants which has improved my quality of life drastically. In fact, I’m doing so well that I feel like I’ll be able to return to work soon once I heal from my surgery. I miss hiking and skiing and adventuring, but I know that will come soon enough. My weight is very low now at 97 pounds, but I think I lost most of that weight before my bowel perforation because I didn’t really have an appetite (due to pain, nausea, etc.) for 2 months prior. I’m doing my best to eat, gain weight, and get stronger. My spirits are much better than they were 2 weeks ago, and I’m excited to get my life back. Please cross your fingers for me. Let’s make Stelara my miracle drug, because I’m sick of being sick!