Health Update: Entyvio

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We’ve had a fantastic summer so far- swim lessons and pool days and a cessation of some of our normal activities. In some ways this is difficult for me; I like routine and I liked having a few hours two days/week with Evy at Mother’s Day Out when I could get school done. But despite grinding through my second management class in NP school, I’ve enjoyed our transition to lazier days more than I had anticipated. It is nice to not be rushing out the door or adhering to a strict schedule. There is freedom in not having to obey a clock or a calendar and at this point, I only have one more real class left in NP school (I start clinicians in August!). It’s surreal to think that after two years of school work, I’m finally almost done with taking tests. Now I just have to stand in a room with a stranger and tell them what’s wrong with them. Actually, now that I think about, that’s way more terrifying.

There are many things I have on my mind to write about but I’ve had several people ask me lately about how I’ve been feeling on my new medication for my UC, Entyvio, so I thought I would update on how that’s been going. Just to catch you up, I developed antibodies to the anti-TNF agents (Simponi and Remicade) in January of this year, which was quite a blow since those medications have worked for me for years now. My doctor and I went through several options but eventually I got started on Entyvio, which is an intestine-specific agent that blocks one type of inflammatory mediator, one of the cells in my body that contributes to my disease progression and symptoms. It’s kind of a last-ditch-effort medication; there aren’t any others beyond this one for treatment outside of clinical trials. So let’s continue to pray that it works 🙂

Entyvio is an infusion that I get at the hospital every 8 weeks. You have to start with three loading doses before you get to a therapeutic, or full dose, level. I achieved that therapeutic level about six weeks ago and ever since then I haven’t had any symptoms. Considering I was desperately ill only about six months ago, that is a huge blessing and a fantastic turn of events. I want to be thankful- there was no guarantee that this medication would work and so far it has been a great treatment option for me. If you want the full story, see this post.

But I often find myself ignoring my disease when I’m feeling fine, mostly because I get worn out. I get so incredibly tired of analyzing every internal feeling, every twinge of pain, when I’m in a flare. You cannot imagine how exhausting it is to premeditate every bite of food you put into your mouth, wondering if it’s ok or if you’ll suffer for it later. Some foods you know you shouldn’t eat, that’s obvious, but others are insidious, vague, and you can only see in hindsight whether or not it was a good idea. You never thought you would obsess so much about food and yet it becomes a major topic in your brain.

I deal with a lot of self-blame when I’m in a flare because I constantly wonder if I did something to bring it on. If only I hadn’t eaten that food. If only I hadn’t let myself get so stressed out. If only… It’s a very detrimental mental place to be and I’ve learned that at the least, it’s not helpful, and at the worst, it’s toxic. Being a Christian, I believe that God is in control of my body and ultimately my health is in His capable, loving hands. While I can do many things to affect my disease progression like stick to my diet and reduce my stress levels, the past several times I’ve gone into a flare there was nothing I could’ve done to change it. I can’t control cells and hormones or my colon. Therefore I also cannot live in that state of guilt and self-blame. It’s a ploy from the enemy to make me even more depressed in those moments, to make me forget that God is good and that He is allowing this trial ultimately for my good.

On the subject of modifiable risk factors, pretty much everyone knows that I believe in taking responsibility for my body and adhering to a diet that I feel works for me. At this point, I’m still eating a Paleo diet (no refined sugar, dairy or grains)  but I’ve added white rice and the occasional sweet treat with no deleterious effects. Again, you have no idea how freeing it is to be able to go a restaurant and not ask a thousand questions about the spices or the glaze, to go get a natural popsicle with my daughter and be able to actually eat it. I’m still a huge proponent of eating clean but I realize that I can’t live my life relying on it to save me. It’s just a diet. God is the one who grants me healing or allows me to be sick.

In my cursory research on the internet I haven’t found many people who talk about Entyivio and that makes sense because it’s a relatively new drug and not many people are on it. I only know of one other person in real life who takes it. So I hope this helps anyone with questions and satisfies the curiosities of a few of you. Again, I’m thankful. I hope I’m entering into a season of…should I say it?…remission? Seems too good to be true but I’m going to trust that the Lord has heard my cries and granted me a period of respite so I can get on with my life, take care of my family, and blog again. Thanks for reading!

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