Crohn's Chronicles :: Setting Up Care in Virginia

It has been quite the process to set up care here in Virginia. I started the process back in September before we even left Texas, but I wasn't able to get everything fully squared away until the beginning of December. I don't recommend moving out of state in the middle of a Crohn's flare. Or a global pandemic :(

Thankfully, all of the records from my old doctor finally made it through the system and to my new GI. Without that info, my new doctor wasn't telling me anything I didn't already know, and it was hard to establish a good plan of care. I met with him on a Telehealth call again a couple of weeks ago, and I felt like we were finally moving toward being on the same page. I will admit; it's hard to trust someone new. I like the new doctor, but he hasn't been with me since diagnosis, so he's jumping in mid-stream, trying to catch up, and it's hard for me to know whether or not he's going to be vigilant about my care. So I still feel pretty hesitant on some things, and I know it's just going to take some time for both of us to figure it out.

Part of the Telehealth call was to address my ongoing {and new} symptoms. While I have seen improvement in some areas, I am just not convinced that the Entyvio is actually working, at least enough to put me in full remission. He does want me to give it some more time {one or two more infusions, so another couple of months}, but he did agree that we are quickly reaching the point that we may need to consider alternatives. My first infusion was in July, so most patients see more considerable improvement by now. It was reassuring to hear that some of my symptoms are actually a good sign {it's weird, I know, but makes sense}, and that they are just part of Crohn's Colitis {in the colon}. Some new symptoms I have been experiencing include hair loss and scalp sensitivity. They're not listed as side effects of Entyvio, but they are common to Crohn's in general. All part of the fun of having an autoimmune, inflammatory disease. Boo.

The blood work that he ordered when I first arrived in Virginia showed that my CRP {inflammation} marker was still up, and that has been my highest concern. Long-term inflammation can cause a lot of damage, so I desperately want to get that under control. And since I am still experiencing symptoms, he wanted to add Lialda to my treatment. It's usually prescribed for Ulcerative Colitis, so I wasn't really sure at first. Plus, it's expensive {not infusion expensive, but still hundreds of dollars}. I did a lot of research and praying, trying to see if it was wise to take it. In the end, I felt like it was worth a try {risk/reward benefit}, though I am still pretty skeptical it will actually work. Plus, then what does that mean for Entyvio? How do I know which is working, or if it's the combo? It's so hard to figure this all out!

I take 4 pills a day, and for some reason, it has been really hard to do this. Swallowing pills is easier than a painful shot. I know this. But somehow, having to take these massive pills every day makes it seem more depressing. With my Humira shot, I only had to think about the reality of my disease every other week. With my Entyvio infusions, I {hopefully} will only have to think about it every 8 weeks. But in taking these silly not-so-little pills every day, on top of my infusions, the reality of my disease is hitting harder. I'm sure I'm just tired and desperate for remission, so that is probably more of the struggle. I'm thankful for access to these medicines and the insurance that helps pay for them. It's just a lot right now, and I think I am still grieving the fact that my disease is active again, and that it's taking so long {and so much} to feel better. 

This morning I went in for my first infusion here in Virginia {Merry Christmas to me!} My doctor ordered some more blood work, this time to measure the amount of Entyvio in my system. I'm grateful for this, as it will tell us whether or not I am getting the right dosage. So we will see what those labs have to say, and see what next steps should be. I will have to have a colonoscopy early next year to assess the inflammation in my intestines and see how all the treatment is actually helping. So sooner than I had planned, but grateful he's wanting to actually see for himself, rather than just guess for another 6 months.

I recently talked with a friend who has Ulcerative Colitis. Or rather, I should say had UC, as she recently had her colon removed. She has been through the wringer with her disease, and I'm grateful that I have someone with whom I can commiserate. As she was getting ready to have yet another surgery, she gave me some wise words, and I'm so grateful for her:

"The beauty in the ashes is that your kids are learning to be compassionate at a very young age. And what a blessing for you to have been in remission while you had your babies! Blessings to you, Erin. Suffer well, friend. This health (or lack of health) road that we are on is hard. But it's the road God has us on. So walk it well."

I pray that my suffering is teaching my kids compassion {and not complaint}. I am beyond grateful for the Lord's perfect timing in allowing me to have my babies before I got sick again {this timing is not lost on me for a second}. And I am praying for the Lord's strength to suffer well. Because it is hard. And I am so weary and discouraged. But He is so kind and good. He is my strength and my joy. I'm not walking this road alone, and I don't ever want to waste the suffering the Lord allows in my life.