Will I Ever Find a Proper Medicine to Treat My Crohn’s?

I was diagnosed with Crohn’s disease back in 2011, and I feel like I have tried it all. I am sure you feel that way too.

Likewise, every Crohn's patient will have a different treatment journey. So finding what works for your body and your symptoms can sometimes feel like an endless pursuit.

My first medication for Crohn's

When I was first diagnosed, I was put on Mesalamine. If I remember correctly, that was the name of the huge red pill that was so awful to me! I don’t have issues swallowing pills or taking medication, but man oh man, was this red pill hard for me. Every single time I would take it, I would throw it up within minutes.

The one or two times I forced myself to keep it down, I ended up horribly sick. I only lasted on that med for a week or two until I phoned my GI to let him know there was no way this was going to work.

Trying out biologics

From there, I was told I should try a biologic. I first started with Remicade. I was on it for almost 2 years and I was always flaring and feeling horrible. Not to mention, Remicade gave me horrific fatigue that was unlike anything I had ever experienced, along with terrible joint pain. After a bad hospitalization, I was switched from Remicade to Enytvio.

Entyvio helped slightly, but again, I was always flaring and going in and out of the hospital, being treated with steroids. So once again, my GI changed me to another biologic, and this time it was Humira.

I loved Humira simply because I didn’t need to go to an infusion center and the convenience of it was something I appreciated. This was the time where the Citrate-free pen was not available, so I hated the sting of the med, but overall enjoyed the fact that it was just a second of pain. 

Every Crohn's patient will respond differently

Humira helped me only in the beginning and soon I started to have bad flaring along with bad side effects from a drug-like depression. It wasn’t until I got off of Humira, that I realized how "crazy" it had made me feel emotionally.

After Humira, I was put on Stelara. Stelara was the easiest out of all the biologics for me, in terms of side effects and convenience. It was convenient because, again, I didn’t have to go to an infusion center, as it was a syringe I would administer to myself at home. Not only that, I only had to do it every four weeks. 

I found the syringe to be practically painless, and it was a walk in the park compared to the Humira sting. Stelara gave me zero side effects, except for some gnarly headaches in the beginning months of starting.

Sadly, even though I practically had zero side effects, the medication wasn’t helping my Crohn’s symptoms. And I again was constantly flaring and landing in the hospital.

A 10-year medication journey

I wanted to share with you my medication journey, as all of these were tried within about a 10-year period. Yes, 10 years of feeling like a guinea pig. Ten years of hoping and hoping and thinking: maybe this time it will work. Maybe this time, this medication will be the one to get me to hit remission... Only for me to be left disappointed.

Well, I’m here to encourage you not to lose hope. Because it was after Stelara that I finally hit the jackpot. A little blue pill called Xeljanz. I was so helpless and hopeless that when the pill arrived at my home, I remember taking it like it was just another Tuesday. I thought: here goes another try. 

Finally: a med is working for my Crohn's

Well, I have to tell you, within a couple of days I started to feel better. I immediately knew this stuff was working for me.

It has now been just over a year and I am due for a colonoscopy at the end of the month. I have never felt better! I don’t know if I am in remission yet, but I feel the best since being diagnosed. I am able to go out, socialize, eat with friends, exercise, and just live my life! 

Granted, I still deal with some urgency, and at times I get cramping and fatigue. But for the most part, I feel great!

So don’t lose hope, friend. Look at my journey! 10 years! I hope it doesn’t take that long for you, but it’s just some encouragement to let you know that an option to have you feeling better may be around the corner.