Not sure how to proceed with my help and I’m at a crossroads…meanwhile I feel terrible
Hey everyone, I'd appreciate everyone's opinion on my what my next step forward should be regarding managing my moderate to severe Crohn's disease. I was diagnosed when I was 11 and had to be treated for a perianal abscess with a fistula. I started off on Humira which helped a lot up until age 13 where I wasn't hitting the lab numbers they wanted. They then switched me to remicade, which immediately worked and helped take me through most of high school. I was feeling pretty good overall, occasionally a loose stool but generally solid. I did have mucus/puss as well as blood in my poop once or twice a week. This was a major point of concern to my doctors, but I didn't care too much as I was feeling healthy and had energy and it had allowed me to participate and excel in high school sports up to this point.
However, going into my senior year my doctor wanted to up my dose on remicade to see if the blood and puss symptoms could be controlled better as I was having them 3-4 times a week but still solid stools. The insurance would only approve the higher dose of the infliximab, the biosimilar of remicade. This was the start of my decline.
Because the insurance was taking so long to v approve the dose and the first couple doses ‹ infliximab weren't showing anv signs of higher therapeutic value, my doctor recommended me to switch to skyrizi. I started the loading doses but month of after month I got progressively worse.
After my third loading dose, I got an awful flareup which led my mom to beg the doctors to allow me to take some prednisone until the skyrizi takes effect. I'm now several days post my first at home injection of skyrizi and I'm feeling terrible again as I have now completed my prednisone prescription.
Once again, l've had an immediate flare up and I'm starting to doubt skyrizi will work for me ( it's now been 12 weeks since I began taking it). I'm also very unhappy with how my Gl has handled my case as she hasn't told me what to expect with skyrizi or even given me a warning that it could take several injections to become therapeutic. Do you guys have any recommendations on how l should proceed? I kind of want to go back to remicade but with an ammuno modulator which worries my parents because of the increased cancer risk, but my mom wants to stick it out with skyrizi. My doctor is open to any of the three but won't really recommend any of them. I just feel really lost right now because I have graduation and every tun thing you look torward to as a kid coming up and I'm about to have to suffer thi it or not experience it at all. I'm also going to play college football and leaving for college in July and I need to be able to feel good going into that or l might as well call my career finished. What should I do? What will give me the quickest avenue to feeling good again before I go off to college. I'm also very unhappy with my Gl as she didn't even recommend prednisone or acknowledge it as a possibility for short term benefits while I'm feeling bad until my mom brought it up to her.
On a different note, my worst symptoms right now are diarrhea with bad cramping but each time I go to the bathroom the inside of my rectum burns horribly. This is my biggest concern because going to the bathroom is a nightmare and even squeezing or clenching my butt to stand up kills me. It's a burning and sharpish pain that I feel inside of my butt where you can't touch. Is there any steroid injection I can get to remedy this before I go crazy? Or any solution lol?