I started taking biologic medications for my Crohn’s Disease (diagnosed with Ulcerative Colitis at the time) at the age of 17. I hardly had a grasp on what Inflammatory Bowel Disease was or what the treatment options were when I started taking Remicade. All I knew was that my doctors told me it would help my disease and potentially put me into remission.
> So I went for my infusions. They lasted for hours because I had a reaction every time I had an infusion and needed to be pre-medicated and required a slower infusion rate.
>But the Remicade didn’t help, so I had a colectomy and j-pouch created. And then because they didn’t want my disease to come back after my colectomy, I went back on Remicade.
And I continued to get sick, so they switched me to Humira.
>And the Humira worked for a while, but I fought with my parents every time I needed an injection because I hated self-injecting the medication.
>And then the Humira stopped working, and I was sick again.
So I was told that I needed a permanent ostomy, and that I needed to try a different biologic.
>But I said, “NO” because none of the medications had proven to be effective.
>“No” I wouldn’t have ileostomy surgery. “No” I wouldn’t take any more medications. “No.” I wouldn’t do everything that the doctors told me to do just because I was the patient and they were the doctors.
And years went by, and I did my own thing. (while communicating with my doctors). I tried “natural” treatments and changing my diet. And I wasn’t the most healthy, but I was okay.
But then I got really sick again.
>So I took medications (but not biologics). And continued to be sick.
>And I finally decided to have a permanent ileostomy.
And I was able to get off all medications.
And then I had to have another surgery because of bowel obstructions.
And I started taking Cimzia because I was scared of more surgery, even though I had no active Crohn’s inflammation.
And I continued to be healthy following surgery.
But it turns out the Cimzia had nothing to do with me being healthy.
And then I got sick again.
And the Cimzia didn’t prevent me from getting sick again.
And I had my most recent surgery, and continued taking Cimizia (even though it was doing nothing for me)
And FINALLY, I decided to switch to Enytvio.
And that’s A LOT to process!
I have taken 4 biologic medications and almost every other Crohn’s med known to man over a course of 13 years. Sometimes the drugs seemed to work, but most of the time, they stopped working. Or maybe they never worked at all. And most of the time I experienced side effects, but sometimes I wonder if they are just the effects of Crohn’s? And there were plenty of times where I was health both on and off medications.
The point is, I don’t know if these medications have helped or not. I don’t know if I’ll get cancer down the line (one of the most feared side effects). I don’t know if my hair falls out and I’m tired all the time because of my medications or my disease. I don’t know if I would have done fine with my “natural” plan. I don’t know if I’m currently healthy because of any of these medications.
What I do know is that I communicate these thoughts to my medical team (with less stream of consciousness). And my medical team communicates their thoughts to me. And we come up with a mutual agreement for my plan. And right now, I’m going for Entyvio infusions. And right now, I’m happy and healthy. So I’m going to stick with this plan.
And as chronic illness patients, all WE can do is have an honest conversation with OUR medical teams about what is working for US in this moment. And if it’s not working, what can we change?
