Just When I Thought We Had a Treatment Plan…It Changed
Treating Crohn’s disease is not easy, to say the least. Each patient is different. Each flare is different. Almost every symptom is different. And, not only is each patient different, each patient can experience different symptoms at different times.
The feelings that come with treatments failing
So, it is no wonder why treating this disease often changes course over the years. However, this presents patients with an overwhelming feeling of defeat, hopelessness, and confusion, as each time a treatment “fails” we are back at the drawing board, scrambling to find a plan that works—for good.
When I was first diagnosed in 2009, I was treated with Pentasa and Entocort when my symptoms got worse. It wasn’t until my first major flare in 2011 that I was prescribed Remicade, which would be taken every 8 weeks.
Feeling hopeful with new medications
I had heard that Remicade worked well for fellow Crohn’s patients and was eager to get my symptoms under control with this biologic. Unfortunately, I was allergic to Remicade and had to stop treatment after my second infusion.
I was disappointed that this method of treatment didn’t work, but was optimistic as I moved on to the next medication, Humira. I’m not sure if it was the upbeat commercials or success stories heard from fellow patients, but I put all of my hopes on Humira being the drug that kept me out of the hospital.
Once again, I lost response after just 12 months and was in desperate search for a new biologic. I was left feeling helpless and discouraged, wondering if another biologic could possibly work.
I finally found a medication that worked for my Crohn's
Phew, I made it! I found the treatment plan that worked for me and that I could stay with for-ev-er. Or so I thought...
It wasn’t until 2015 that it was discovered by my doctors that I have metastatic Crohn’s, which means it is located in other parts of my body than just my large and small intestines (but that is for another story down the road). Entyvio only addresses disease in the gut, therefore, while my GI symptoms resolved, I still had other symptoms that would rear their ugly head which meant another biologic was necessary.
Back to the drawing board I go.
Remission and positive results
Fortunately, I started Stelara in 2017 and it helped to keep me in remission, and was actually easier to administer than sitting for the Entyvio infusion so I felt that I had reached a good place in my treatment plan. I felt well, my labs looked good, and my annual colonoscopies were always showing "no active disease".
Then, just two months ago, my treatment plan was put into question by my GI. I had had a colonoscopy which showed a few (5 to be exact) superficial ulcers that caused slight concern by my doctor. Just to be safe, she ordered lab work and a test to measure level of Stelara in my body to make sure it was at a therapeutic amount.
Needing another change in my treatment plan
Fortunately, the blood work came back in all normal levels, however, the labs for the Stelara showed that the levels were quite low. So, another change in the treatment plan was on the horizon, almost four years later.
My GI and I decided to change the frequency of my Stelara from every 8 weeks to every 4 weeks just to ensure there are no potential flares down the road. I am a bit disappointed, as I didn't know that after having 4 years of luck and success with a biologic that I could be at risk of it not working as well.
What is your comfort level disclosing your IBD to your employer?