When Your Crohn’s Treatment Needs to Be Changed… Again

A few months ago, I wrote an article about a change in my Crohn's treatment plan. Little did I know that it was just the beginning of series of changes that were on the horizon.

I like to think I am optimistic when it comes to living with Crohn's. I am a fan of the "if you can't change it, change your attitude about it" mantra, and I feel that it was written specifically for people living with a chronic illness

However, I was dealt a decent blow when I found out that my treatment plan was no longer working for me and I had to make yet another change to my biologic medication.

Switching biologics: my backstory

If you haven't read my previous article on treatment changes, I will recap. (And remember, every patient is different, so our treatment experiences will all be different too.)

An elevated calprotectin test result and some ulcers spotted in a colonoscopy caused my GI to test my Stelara levels to see if it was at an optimal level. The results proved I had room to increase my dose from every 8 weeks to every 4 weeks so I tried that for a few months.

I was frustrated that this had to change, but things escalated from there, thus causing another course correction a few months later.

I had labs to check my calprotectin levels three months after increasing my Stelara frequency, which were unchanged despite increasing my Stelara frequency. My GI suggested doing another colonoscopy so that we could see exactly what was going on inside, and to my disappointment, more ulcers were discovered than what was seen a few months prior. 

I was devastated to hear that despite increasing my dose of Stelara, I was trending in the wrong direction and was no longer "in remission" after nearly 6 years.

Dealing with Crohn's treatment changes

But, I kicked into "optimistic mode" and looked for the silver lining. I felt grateful that we discovered an issue before it became worse or turned into a flare, and I wanted to take action immediately. 

My GI suggested getting more blood work to see if my Stelara levels were at an optimal level. Truthfully, I no longer wanted to mess around with Stelara. If, after cutting the frequency in half I not only did not improve, but got worse, I had little hope that increasing the Stelara even further would make a difference.

I remembered that I was declared in remission while on Entyvio back in 2016. However, my disease spread beyond my gut so I decided (along with my GI) to switch to Stelara.

I decided to take a chance that my Crohn's was otherwise controlled and wanted to go back on Entyvio since I knew it would heal my gut and (hopefully) put me back in remission. 

So, I started Entyvio again just two months ago and have felt really well since then. Also, as a bonus, I am able to get it done as an in-home infusion which helps as a mom to an 18-month old.

Our Crohn's journey is constantly chaning

There are two things I hope you take away from this article and my experiences with switching biologics.  

First is that our journey with Crohn's is constantly changing and while we should be grateful for the good days, we should never take them for granted. Secondly, use setbacks in a positive way and take control where you can. 

Had I waited for the blood work to check my Stelara levels, it would have delayed the proper treatment I needed. I didn't want to waste time and knew action had to be taken immediately. I needed to advocate for myself to my doctor.

Despite being disappointed with yet another change to my treatment plan, I am glad I had the opportunity to get ahead of any potential complication and start the treatment that works for me.

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