I got my lab results back, and my maintenance level of Stelara was too low {which means I am not at therapeutic levels and there is not enough in my system}. So my GI actually wants me to move up my dosing to every 4 weeks. It took a month, multiple denials and re-submissions, but insurance finally approved it! It's actually an automatic denial through insurance because it's not currently approved for shorter intervals for Crohn's. But there is growing evidence that more people achieve remission at 4-week dosing, instead of the currently approved 8 weeks. So I am thankful for a GI who is current on that research and willing to go to bat for me with the insurance company.
I actually took my dose yesterday, which is 7 weeks from my last one. But now that everything is approved and settled, I can take it every 4 weeks moving forward. Since I saw improvement on my last colonoscopy, I'm hopeful {prayerful} this could be the little extra boost that will kick me into remission.
Some good news: I have definitely seen improvement in my energy levels, so the iron supplements are helping! I still have to manage my fatigue and steward my energy well...but I am no longer in need of a nap every day, which is so helpful on the days when I just can't get one {which is most days haha!}
I will be curious to see if any side effects from Stelara will increase with the increased frequency. I do believe that Stelara has intensified my migraines, but I am wondering how boosting my iron levels will help balance some of that. I have been unsuccessful in identifying any food triggers, but do believe the migraines are mostly triggered by environmental factors: changes in weather pressure {which I can't control}, loud/constant noises {hello, children}, dehydration {something I can control!}. I do plan to find a new Primary Care Physician and address the migraines more directly, especially if the increase in Stelara becomes an issue.
I recently saw my dermatologist again for my 6-month check up. Since I am on Stelara, she wanted to see me more frequently, and she confirmed that again, now especially knowing I am increasing my dosing. I'm sure all of the biologics come with an increased cancer risk, but Stelara is the only one with a documented risk increase for skin cancer. So I'll see her often, because I'm not messing with that. She removed and biopsied two more moles, but thankfully they both came back benign.
It's crazy to me that to "feel better" I have to manage vomit-inducing/ice-pick-painful migraines, fatigue, and increased skin cancer risk. And those side effects, or consequences, or whatever you want to call them, are terrible, for sure. But this is the best way that I can describe to people how sick I really have been: hands down, every day, I'll take those side effects, because as terrible as they can be, I still feel so much better than I did. It's not perfect; I'm still not at "remission better." And trust me, I would rather not have ANY of it. But this is life with Crohn's.
As I think back over the last 2.5 years, I feel overwhelmed and exhausted. I'm crawling toward an unknown finish line. And there is a reality that this won't be my last race. Even if I achieve remission, and even if I have a few good, "healthy" years...I face the reality that I will be back in active disease again, because Crohn's stinks and there is no cure. The damage that has been done to my intestines over the past 2.5 years is irreversible, so I most likely will become part of the 75% of Crohn's patients that have at least one surgery in their lifetime. If not within the next year, then for sure the next time I'm out of remission. And some days that feels really defeating, given how much I have fought for health.
I also feel grateful and encouraged. The Lord's timing certainly has not been mine, and I struggle sometimes to understand how me being sick for so long is helpful or productive. But there has been improvement; I am not where I was a year ago, or even a year before that. While I'm not at 100%, I am able to function more than I could before. I have more good days than bad days {something I couldn't say a year ago}. The Lord has provided what I have needed for each day. He has not forgotten me, and He has taught me more dependence on Him. And I am able to teach my kids empathy and patience, the value of prayer, and serving even when we don't feel our best. And we all long for heaven when Mommy can "get a new tummy that doesn't have Crohn's" from Jesus :)
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