It just so happens to be Crohn's & Colitis Awareness Week! I'll be honest, I'm too tired to jump all in and do all the awareness posts. I'm in too deep in active disease, still trying to get to remission. So my efforts toward awareness this year are just going to be an update on where I am in my Crohn's journey...and just a friendly reminder: Crohn's sucks :)
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I took a 1/2 step forward {feeling a little better after my first Stelara shot}, but am already back to pre-Stelara shot symptoms. Sigh. I had a good 3-4 weeks after that first Stelera shot. I was cautiously optimistic; I hadn't felt that well for over 18 months {!} But about a week before my second Stelara shot, my symptoms came back. I am now 4 weeks on the other side of that second shot, and am still waiting to see that same upswing again.
I was finally able to get in to see a Primary Care Physician. I had to find one to get my B-12 levels checked, because insurance is stupid and won't cover that order from my GI anymore. He can order every other test under the sun...but not B-12. Even though my Crohn's can directly affect B-12 {who decides these rules, anyway?} I have no idea how that makes any sense at all, but...at least now I have someone to go to if I get sick like a normal person haha.
But when I got my results back, my B-12 levels were normal. Which is good...but also bad because now I don't have something on which to blame {or fix} my fatigue. But my LDL Cholesterol is elevated again, so all the inflammation I have been experiencing the past 2 years because of active Crohn's is starting to attack more parts of my health. The prescription is to change my diet {but I already do all of the recommendations, so that's no help}, exercise {which is difficult when I am sick and fatigued all the time}, and add fiber. I will do everything I am supposed to, but it's so defeating when I am doing everything I can and my body is still falling apart. And the one thing I need, I can't seem to achieve. I need to be in remission.
The PCP was helpful in talking through some self-treatment ideas for the migraines I have been having. I appreciated all of her suggestions, and we will continue monitoring them to see if we can identify any specific triggers. There are medication options, but I am trying to avoid those, since it's better to prevent the migraines in the first place anyway, and since I am not really wanting to add another medication. I have already seen some good results from the suggestions she provided, so I am hopeful I can start managing those migraines better.
I had a follow-up with my GI as well, and I was able to get some more details from my colonoscopy {which was back in July...long story on why it has taken so long to get those details...just know that COVID does in fact affect ALL healthcare}. He told me that there was so much narrowing in my intestines that he wasn't able to get the scope all the way through. The best case scenario is that it was just the result of inflammation, and getting into remission will fix that. But if it was the result of scarring, then I will have other issues to address, and soon we may be talking about surgery. It's expected that most Crohn's patients have at least one surgery during the course of their disease. But I have worked so hard to avoid that: being aggressive in my treatment, faithful to take my medication and stay away from my triggers, reduce stress, etc. But the longer I am sick, the more damage that happens.
And because I love seeing doctors... I also finally saw a new dermatologist for a skin check. In 2019, I had a mole removed that was biopsied and came back pre-cancerous. So I knew I needed to be sure to go in every year, but with 2020 being what it was {for COVID and our move}, and wanting to focus on getting my Crohn's under control first {so much for that}, this is the first I have put it on my to-do list. And that is also because Stelara increases my risk for skin cancer {lucky me!} So off to the dermatologist I went...I learned that most people make one type of mole, so if one "doesn't look like the others," then it's easy to identify and address it. I apparently make ALL the different types of moles...so it's harder to catch the ones that don't belong. Haha- of course I do! So...I will now be going every 6 months for regular skin checks. Thankfully this check didn't reveal any issues, but I am thankful she was instantly knowledgable about my risks {without me having to tell her}, and wanting to be proactive.
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I think it's all hitting harder right now, simply because I hit that 2 year mark. I have been sick for 2 full years, and I am not seeing a clear light at the end of this horrible tunnel. And that's just so discouraging. And scary. While being sick for so long is tough, I constantly worry about the damage being done to my intestines in all that time. And even achieving remission won't reverse that damage. And of course, I am seeing it affect other parts of my health, which is never good. It's just more of the reality of my disease, and I am just so weary.
But I have made it 2 years! It hasn't been sunshine and rainbows, but I'm still here, still fighting. And I have miraculously avoided any hospital stays in that 2 years. Truly: that is a HUGE gift from Jesus. The Lord has sustained me for this long, faithfully walking with me through the {countless} hard days. I may not understand why He's not bringing healing, but I trust that He is still good.
So what's next? My next Stelara shot is at the end of December. I will get blood work done right before I take that shot to measure my inflammation levels, as well as the drug levels/antibodies in my system. My GI will then be able to determine if we change course: increase dosage or change treatment altogether. In the meantime, I will continue monitoring my symptoms, and I get to make the call on whether or not I take another steroid to help calm things down while I wait for my next shot. I will also repeat my blood work with the PCP in 3 months to see if adding fiber and trying to exercise some more improves my cholesterol at all. I know it can only help, but again...I need to be in remission. Please, Jesus.
Did I mention that an incurable autoimmune disease is not super fun? :)
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