New GI Doctor + Another Round of Tests

I mentioned back in December that my GI doctor was leaving the practice, and that I would need to find a new one. I was able to ask around for some recommendations and ended up with one who happened to be in the same practice as my old doctor. While I would have preferred to find a new office, I decided to give her a try, as I knew the transition would be easier, and I could always look elsewhere later, if needed.

I am so glad that I did! I really like the new GI. She spent a lot of time with me, was thorough, listened to all of my concerns, and truly wanted to get at the heart of my issues. As I shared about all of the side effects that I have experienced while on Stelara, she immediately wanted me off the medication. In her mind, there is no reason for me to have felt so bad for so long, remission or not. In addition, she was not convinced that all of what I have been experiencing are actually side effects. Given my symptoms, my intermittent flares, and the inflammation they found on my MR Enterography last year, she is wondering if perhaps the Stelara is not working as well as we think, and that my symptoms are actually my Crohn's manifesting itself. 

We did have the conversation about insurance*, and how I don't like to jump from medication to medication too quickly, given the fact that there is no guarantee any given one will work, and that there aren't an endless number on the market. And I am so grateful that she listened, and we could have a productive and respectful conversation about all of it. I absolutely hate being on Stelara. But I hate active Crohn's more. 

*Back in April, I found out {completely by accident, not because the insurance actually informed me} that, staring in May, they were going to stop covering my medication. As in, it was not going to show up on the covered list of medications on our insurance plan anymore. Which, let's be honest, they haven't been paying for my medication since January, when I signed up for the Johnson & Johnson financial assistance program. But now, there is no insurance backing, and the drug company fully pays for it. For now.

So our plan of action was to run some tests and see if we could gather some more information and get a better picture of what was actually happening before making any decisions. Fair enough. 

Bloodwork

First up, she ran some routine and extra bloodwork. My inflammation markers are normal {again}, but she said that doesn't always give us the full picture, and that I shouldn't always rely on that alone. I can also, thankfully, say that I do not have Lupus.

But again, my chloride levels were high, and my carbon dioxide was low. This has happened repeatedly on bloodwork, and I have had a couple of doctors dismiss it. She didn't mention it, so I do want to follow up on it.

DEXA Bone Density Scan

I can now add to my list of "old lady" tests a bone density scan haha. The test itself was super simple: I just had to lie on my back and wait for the machine to take a picture, and then I was done. Thankfully, the results came back normal. Which is a huge relief, considering my age.

MR Enterography

She also had me repeat an MR Enterography. After my experience last year, I was a lot more prepared for this one. The experience was very similar, and my body reacted the same way to the Breeza. But since I knew it was coming, I was able to keep myself calm and not panic before the scan haha. And thankfully, I made it through this scan without any issues.

Thankfully, everything came back clear. There was no inflammation on the results, no indication of Crohn's Disease. Which is fantastic news! 

-------

So it seems like my symptoms are the side effects of Stelara. The migraines, the muscle and joint pain, the fatigue...all side effects. The intermittent flares could still be Crohn's-related, but Stelara keeps them controlled. And for now, by God's grace, Stelara is keeping me in remission. 

Back to Stelara

Back in August, I started my battle with insurance over my Crohn's medication. I received approval, and then they went back on their approval, I was forced onto the biosimilar Wezlana, and I have been working through all of the side effects. 

I saw my GI about a week ago, and I was actually ready to work through a transition plan, because it was my last appointment with him. He is leaving the practice at the end of this year, and I wanted to get his thoughts on where I go from here. I can't tell you how devastating this news is; I am beyond grateful for my GI, and I trust him completely. He has fought for me on many occasions, and I was so disappointed when I heard that I would have to find someone new. But I know that the Lord has a plan, and I am praying for the right care as I search for a new GI. 

When I relayed to my {still current} GI the side effects that I have been facing, he was NOT happy. As a last chance effort and parting gift, he wanted to try to appeal the insurance one last time, as he felt I was stable on Stelara and should never have been moved to the biosimilar in the first place. {Again- he's amazing, and I appreciate his care for his patients so much}. I honestly didn't expect much, considering how long our fight took last time and that he was leaving, but I appreciated his zeal, said my goodbyes, and left. 

In less than one week, I received an uncontested approval from the insurance and a dose of the Stelara on my doorstep. Just like that, and I am back to Stelara. I can't tell you how floored I was to hear that they approved it. I didn't believe it at first; I didn't trust it. And then the pharmacy was filling the script, and it arrived on my doorstep. There's still a part of me that is waiting for the insurance to say, "haha, just kidding!" And I guess, technically, they still could. 

But for now, the Lord {unexpectedly} moved mountains for me! I didn't even ask Him to this time. I have refills for the next 9 months, and I am back on Stelara. I am praying that the transition back is smoother than the transition away. And I am praying that the blip in treatment is just that: a blip. That I remain in remission.

Crohn's Chronicles :: When Insurance Fails

Back in August, I talked about my battles with the insurance over my Crohn's medication. When I received the letter that they were no longer going to cover it, that they were pushing me to the biosimilar, I was advised to contact my doctor as soon as possible to see if there was a less expensive medication to be prescribed. If my doctor wanted me to stay on my current medication, I could submit an appeal and fight.

I chose to fight.

In the 13 years I have been taking biologics and dealing with insurance companies, I am more than familiar with the game they play, the time it takes to walk through these processes. And because of the timeline I face to keep continuity in my treatment, I didn't waste any time in contacting my doctor and getting the ball rolling. I had already had the initial conversation with him about the biosimilars, because I was aware this letter was inevitably coming. So when it came, I was ready to respond. 

My doctor went through the appeal process, and miracle upon miracle, I received my approval! The medical director overturned the initial denial and authorized coverage for my medication through August of 2026. I was beyond thankful, and was relieved to move forward. I was able to fill my medication without any issues in September, and I thought I was set until next year.

In late September, I received a phone call from the pharmacy, informing me that I would not be able to fill my medication in October, but would instead be receiving the biosimilar. I figured it was an error, that they just didn't have the updated information, but asked how I could verify it. I was told I would have to wait until it was actually time to fill my prescription {in another couple of weeks}, in order to trigger the claim with the insurance. I thanked her, still thinking she was misinformed, but still called my insurance to verify they still had my approval in place. They told me they did, so I didn't worry about it.

Fast forward to October's refill, and of course, I was unable to get my medication. They refused to fill it because they insisted the formulary changed on September 1st, my approval was no longer valid, and that I was now required to take the biosimilar. I looped the insurance company in, which started a long and frustrating back-and-forth with wrong/misinformation, empty promises, lack of call backs, etc. 

One rep told me I needed 2 prior authorizations {wrong}.

The next rep hung up on me {rude}.

Another rep escalated it to the "back office" and promised I would receive a call back in 3 business days {I did not}.

When I followed back up, I finally received acknowledgement that I had a prior authorization in place and that I should not be having issues {thank you!} and that a supervisor would get it sorted with the pharmacy. I would receive a confirmation email the next day and would be able to fill my prescription then {lies}. This was when I first posed the question on whether I was facing issues because my prior authorization was dated the end of August, and the formulary changed September 1st, but reminded the rep that the whole reason my doctor went through the appeal process to begin with was because the September 1st change was coming.

When the supervisor emailed me back the next day, she informed me that things were not, in fact, sorted, that my prior authorization/approval was invalid, and that I would have to take the biosimilar. She cited the September 1st formulary change, essentially saying they were not going to honor my approval and I was out of luck. When I inquired further about my doctor's intent to address that September 1st change, she never responded back.

The final person I talked with got so far as to tell me she just needed to apply a code to get me my medication, but it was going to take up to 10 business days to take effect. I told her I didn't have 10 business days {I was due for my next dose}, and more importantly, I had been down this road before. What would happen if I got to the end of 10 business days and they came back with the same response as the supervisor from the day before? She did more digging and came back with the final answer and acknowledgement: they were absolutely NOT going to cover my medication, yes I was, in fact, being punished for being proactive, and I could file a complaint with the Virginia Bureau of Insurance in an attempt to compel them to honor my original approval. 

When I called the Virginia Bureau of Insurance to get more information about the process, I learned that it would take 30-45 days for a resolution, and that most of the information would be gathered from the insurance company. I didn't walk away from that conversation feeling confident they were truly going to be advocating for me. I haven't fully decided whether or not I am going to file a complaint; I may still. But I can't wait 6 weeks for a decision, only to be in the same place {and then also having skipped treatments in the meantime}. 

-------

This truly is a David and Goliath situation, and unfortunately Goliath wins here. My hands are tied. I have fought as hard as I can, within the bounds of my situation and reason. The right thing would be to allow patients who are in remission to continue on Stelara, until there is a change in their health status. Then move them onto the biosimilar. To move Crohn's patients who are starting treatment onto the biosimilar, not ones who are in the middle of current effective treatment. But the insurance company is not interested in what is right. They are interested in money alone. The insurance company gets to make decisions regarding my health, regardless of what my doctor says. It doesn't matter that I am in remission, it doesn't matter that my treatment is working, and that the science says that Crohn's patients shouldn't have disruption in their treatment. It doesn't matter that I have a history of issues with a change in formulary with a biologic. 

I have had my time to rant and rave and scream at all of the injustices over this. This is not the outcome I hoped for. I am super nervous about moving to the biosimilar. But the Lord is faithful, and I know that He will take care of me, whatever comes next. 

Crohn's Chronicles :: Insurance Battles

I have been immensely blessed to have health insurance throughout my Crohn's journey. The medical care needed to manage a chronic disease is endless, and the medications to treat my disease are exorbitantly expensive. So I am thankful to have access to the care I have needed over the years.

But it hasn't always been easy. More often than not, it has been a fight to get insurance to cover my medicine. I understand that they are expensive; but there simply have not been many options. When I was first diagnosed, there were only 3 biologics on the market; one wasn't really an IBD drug {Remicade}. Over the past decade, more options have become available, but nothing more affordable. 

Over the years, I have spent A LOT of time on the phone with insurance companies, HR departments, doctors' offices, and pharmacies. In an attempt to get coverage, to get the entities to talk with one another, in an attempt to explain to each what is actually needed. There is so much misinformation, and it's so disheartening, considering they often get to make final decisions regarding my health. I have had some defeats, many wins, but the Lord has always been gracious to provide for my Crohn's care.

This past year, many of the patents on the biologic medications expired, which opened the door for biosimilars. In the simplest of terms, it's like a generic in the biologic world, though it's not quite the same. Because of how biologics and biosimilars are made {and approved by the FDA}, biosimilars only have to be, well, similar, not identical. Which can make a difference in the efficacy of the medication, particularly for a patient who has already been taking the original biologic. Because any change in the formula can make a difference. 

{Case in point: I took my last Humira shot with citrate in April of 2019. My symptoms returned within 6 months, and I was out of remission, confirmed by colonoscopy by June of 2020. The drug companies can argue all day long that the citrate made no difference. But that one alteration in the makeup of that biologic made ALL the difference in my body. And I will never be convinced otherwise. I have regretted that decision every day since.}

So instead of allowing continuity of care, particularly for patients who have achieved and proven remission, they're forcing ALL patients to the biosimilars at an arbitrary date, in the middle of their care. I tried really hard not to be angry or cynical about the whole thing, but mostly I just feel tired. Tired of paying high premiums, only to be denied care. Tired of non-GI insurance "doctors" making decisions about my health. Tired of fighting, tired of being sick, tired of having to fight while sick. 

After many messages and phone calls between my doctor's office, my insurance company, and the pharmacy, I am tired and frustrated. It has been hard to see a way forward. My heart has actually been prepping for the worst. I don't want to be defeatist, but I have had this disease and taken these medications for too long to not understand the reality of what I could be facing. I want to have faith that all will be well. That somehow, miraculously, the insurance company will grow a heart and cover my medication {they denied my first appeal, so we are continuing the fight}. That even if they choose not to cover it, moving to the biosimilar will be fine! That I won't have any side effects. I won't lose my hair again, like I have every time I start a new biologic. It won't disrupt my carefully-crafted migraine treatment. It won't throw me into a flare. I won't be out of remission next year...

But even in my frustration and fear of what could lie ahead, I still {shakily} choose to trust the Lord. I have to. He knew this was coming. The same way He knew my initial diagnosis was coming. How I would have to learn to live with this awful disease. The same way He knew when Humira was going to stop working. That it would take 3 long years to get back into remission. And He walked with me every step of the way through all of it. He never left, and He has provided everything I have needed along the way. And while I was frustrated every time then because I just wanted ________ {X medication, X side effects to go away, my health, remission, etc.}, He was lovingly and patiently showing me more of Himself. Making me slow down, spend more time on things that mattered. Making me long more for Him and heaven. 

I'm thankful for a GI doctor who does the research and understands my personal care, and does not automatically jump to switch me to the biosimilar, dismissing my concerns. I'm thankful that he is willing to fight the insurance company with me, going to bat for me every year to get the medicine I need. I'm thankful for the many, many years of remission I have experienced in my total years of disease. I'm thankful for a husband who takes care of me and works hard to ensure that I can rest and take care of myself in the way I need to, so that I can be as healthy as I can be. 

And I'm thankful for the Psalms and the ability to express the frustrations, while still pointing me back to the Lord:

"How long, O Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I take counsel in my soul

and have sorrow in my heart all the day?

How long shall my enemy be exalted over me?

But I have trusted in your steadfast love;

my heart shall rejoice in your salvation.

I will sing to the Lord,

because he has dealt bountifully with me."

- Psalm 13:1-2, 5-6

If You Give a Doctor an Annual Physical...

...she's going to want to do the usual work-up, including a health questionnaire and blood work. Most of that will be straight-forward when you see her in May. Thankfully, all of your vitamin levels are normal {for once}, but your cholesterol is off again {good cholesterol is low and bad cholesterol is high}, so you'll need to add some Omega-3 vitamins to your increasing supplement regimen, because you already eat avocado, lean protein, and salmon, and you can't have nuts or flax meal. You also can't lose more weight, and you already abstain from alcohol and have low blood pressure and low blood sugar. You can stand to exercise more, but you know that Crohn's is somehow the culprit for the cholesterol imbalance...

...but the doctor will also ask if she can do an EKG. You're 40 now, so why not?

But when she finds something abnormal on the EKG {a right ventricular conduction delay, to be exact}, she will then want to do a sleep study. She asks if you snore, and while you do sometimes, you know that it's not really that bad. But you're here, and you have met your deductible, so why not?

So you agree to the sleep study. The best part is that you can do it at home. The worst part is that you have a too-tight talking contraption strapped to your head for the night. And while it confirms that you do snore, it's a mere 40 dB, the level of rustling leaves or the hum of a refrigerator. The good news is that you do not have sleep apnea {which is what she was trying to confirm}, but the bad news is that it now means we still have the abnormality from the EKG...

...so the doctor will then refer you to a cardiologist. And you will realize that you have yet another -ologist to add to your long list of specialists. Which is also the reason that you tend to skip over regular physicals, because they're usually redundant and pointless. And besides, you end up running down a rabbit trail of testing that shows mostly nothing {or what you already know}...

...Because of the cardiologist's availability and your own schedule, you don't see him until August, which is ok, because the original doctor said it wasn't urgent. When you show up to the cardiologist office, you are, once again, the youngest one in the waiting room, but you are now questioning the Doogie Howser nurse who takes you back to prep you for the doctor. He doesn't look old enough to drive, let alone take your vitals LOL. And you realize that you are firmly middle aged. Hence, why you are in a cardiologist office...

...when the cardiologist walks in, he is surprised to see you, mostly because you don't look like most of his patients. But you walk through all the tests and health history anyway to be thorough. The cardiologist will use lots of technical medical jargon to explain the EKG abnormality, but then reassure you that you are absolutely fine. That he reads thousands of EKGs and mine is, in fact, completely normal. That because you have had no symptoms, are a normal weight, don't snore, and have zero of the risk factors, the abnormality they detected is 100% within the range of acceptable. You were basically born with this heart rhythm. He will apologize for any unnecessary worry, will praise the "amazing" and "fantastic" blood flow in your ankles, wrists, and neck, and will send you on your way...

...and you will confirm what you knew from the very beginning: that there was nothing wrong with your heart to begin with, that you know your body better than anyone, and that your theory of not needing annual physicals still holds true...or at least you haven't found a primary care doctor to disprove this theory yet {but this only applies to you because of all the other doctors you see...everyone else needs to go see their doctor. And it needs to be one they trust ;) }

Health Check-In :: Colonoscopy

In January, I was working through a Shingles diagnosis and needed to take a second round of the anti-viral. Thankfully, I was cleared after that round, and then I was able to get back on Stelara. The time that I was off Stelara, which was about 3 weeks, I didn't have a migraine, which was a huge blessing! And also a major confirmation of how much I hate the side effects of this medication.

I had also had an MR Enterography, which showed inflammation in my ileum, so my GI wanted to do a colonoscopy to further evaluate. The prep for a colonoscopy is never fun, and because this one was scheduled later in the day, I had more fasting time. Which sadly triggered the return of my migraines. Thankfully, I was able to take my rescue med before I had to drink the prep, so it was able to circulate in my body long enough to work and carry me through the whole process.

I had the generic of Suprep this time, and the downside was that it tasted sweeter than the name brand, which made it harder to get down. But my overall increased water intake over the past year made the additional 32 ounces of water after each round a walk in the park! I still had to sit in front of a heater outside the bathroom, because the massive amount of liquid in a short time made my whole body shiver with cold. But the upside is that I got more sleep overnight, and ultimately made it through.

Bottoms up!

When I got out of the procedure, my GI was actually very pleased with what he saw. He said that things looked better than what he expected, and that he wasn't overly concerned. That we would wait on the biopsy results and then make decisions from there.

The biopsy results came back with no evidence of pre-cancerous changes {huge praise!}. But we still have the discrepancy between the MRE and colonoscopy. He spoke with the radiologist, who is theorizing that the inflammation is deeper than what the colonoscopy can show on the surface. Because all of my other markers are good right now {no symptoms, good biopsy results, good labs}, the plan is to keep my medication the same and monitor things. I don't love the idea of inflammation simmering under the surface {literally}, because long term inflammation causes damage. But there's not much else I can do about it, except pray. Pray that Stelara continues to target the inflammation, or that other issues become apparent so that we can address them more specifically {hence the monitoring}.

So for now, I praise God for no cancer and no surface inflammation. I praise Him for no symptoms and good labs. And I will continue praying for remission to hold and strength to endure the side effects in the meantime. And a cure. Always praying for a cure for this awful disease...

Health Check-In :: Shingles

I recently posted about some of my health stuff, and I have had some updates. There is a reason this is a chronic illness and it is considered a health journey. Because there is always something, and it's never settled. So I take a deep breathe and get ready for the next round of whatever comes next. And while that can be overwhelming and frustrating at times, I am thankful the Lord walks with me in every part of the journey.

MR Enterography Results

Even though all of my blood test inflammation markers from earlier in the month were within normal range, the MRE showed mild active inflammation at the terminal ileum. In other words, my Crohn's is likely active again. There was a mild luminal narrowing noted {most likely caused by scarring, which we were aware of}, but the good news is that my bowel is not obstructed.

The MRE also showed small benign hepatic cysts, as well as a gallbladder polyp. My GI wasn't concerned about these, and they are consistent with abnormal growths that I tend to have within my body. {Isn't that lovely?}

I will need a colonoscopy so that my GI can further evaluate and take biopsies at the inflammation site. It will be interesting to see if he can even reach the site to biopsy, because he wasn't able to last time, due to the scarring. My hope is that, because the inflammation is milder this time, that will allow easier access.

Sigh. Definitely wasn't expecting that. It brings up SO many questions, but I am trying not to let my mind run ahead until we have more information. 

And so much for avoiding a colonoscopy haha!

6-Month Skin Check + Shingles

I had my normal skin check last week, and thankfully all looked good from that. But a week prior to that appointment, I had an itchy spot on my back. I had just assumed it was an intense bug bite. When the dermatologist asked about it, I told him just that, but he said that no, it was Shingles {!} He asked if I had had any recent stress {ha!}, which is what probably brought it on. I am so thankful I had this appointment already scheduled, because I would have just ignored the spot, still thinking it was a bug bite. So we caught it early, and I was able to start an anti-viral {Valtrex} right away.

When I first started the Valtrex, my ears were clogged for several days, and it kind of felt like I was in a tunnel {super strange}. It also has not been kind to my GI system. It has caused off and on dizziness and my insides have not been happy all week. But the worst part is that I had to stop taking my Stelara. I was due for my shot the day I was diagnosed with Shingles, and I was not able to take it. My GI wants me to wait until I am cleared of the Shingles before I resume taking Stelara. Both medications suppress the immune system, so taking them at the same time would significantly increase my risk of developing serious infections. It would be very difficult for me to beat Shingles if I continue taking Stelara. I hate missing doses, especially knowing that I have active inflammation right now, but I need to get rid of the Shingles.

I followed up with my GP yesterday, and unfortunately, it's not clearing up in the way they would hope. Thankfully, it's not getting worse or spreading, which is a huge praise. And I am incredibly lucky that I am not experiencing any pain. But even though I stopped taking the Stelara, I am still immunosuppressed, so it's likely taking my body more effort to fight off the Shingles. So she extended my treatment, and I will go back next week to see if there's any more improvement.

In the meantime, I will fight through another week of feeling yucky and praying that the Shingles starts to heal so I can avoid another extension and get back on my Stelara treatment.

We're just going ALL IN on this old lady thing, huh? ;)

 

Health Check-In :: MR Enterography

It has been awhile since I have done a health check-in. I have been meaning to update, but I kept waiting on test results/updates, and then everything happened with my brother... 

Migraines

In November, I saw my neurologist, and I confirmed a complete switch over to using Nurtec as my rescue medication. And that has been going well. We did determine that my migraine pattern has changed {who knew that could happen?}, and it's not that my meds are not working. So basically, my new pattern is more having a migraine every 4-5 days. I take the Nurtec, and usually I only have to take 1 pill, and I am good for another 4-5 days. Sometimes I have to take another pill on day 2, but not always. Every now and then, I have to take a pill on day 3, but that is rare. But overall, I am still only taking my prescribed 9 pills in a month, which is still a praise.

Now, I stretched that over December, and I gave myself some grace on that with all the stress and grief of my brother. With crying being a trigger for my migraines, it was inevitable that I was going to get more migraines. It was unavoidable, and trying to keep myself from crying in that situation was only going to make it worse. So over December and January, my pattern has been closer to every 3-4 days, with more times of me having to take multiple-day pills. Which is not awesome or ideal, but I am hoping that it calms down as time passes. Even coming home, I have seen improvement. I honestly expected my migraines to be worse than they ended up being, so I am thankful for that grace. And I am just so thankful I have a rescue med that works. Even in the most intense grief, the Lord was taking care of me.

GI Follow-Up

At the beginning of December, I also had a 6-month follow up with my GI. He ordered all the routine lab work, and he gave me the option of doing a routine colonoscopy or an MR Enterography {MRE}. I asked what the downside was to the MRE {thinking it would be better than having to do the colonoscopy prep}, and he said there was no downside. So I opted for that.

We also discussed the upcoming patent expiration for Stelara and insurance moves to biosimilars {which has already happened in the UK/Canada}. He said he hadn't seen any moves to that yet, but that we would just have to wait and see what the U.S. insurance companies did. He didn't seem confident that they would make decisions in the interest of patients, but instead would make decisions in the interest of cost. No surprise there. But he promised he was watching it, and he was definitely in favor of keeping his patients on the name brand drugs, as he didn't typically see the same efficacy of the biosimilars {they are not like generics}. So that still remains to be seen what will happen.

I had to reschedule my tests until I returned from Texas, but when I received my labs back at the end of December/beginning of January, all of my numbers were normal. All of my inflammation markers were still normal. Praise God!

MR Enterography

I had the MRE in January, before we left for Texas the second time. I had the {false} assumption that it would be easier than a colonoscopy. No one gave me any instructions for the procedure, and I just had previous {brain} MRI experiences in my head. And I just didn't think. When I called to make the appointment, and even when I received my confirmation call a week out, they told me to arrive 15 minutes before and said nothing. 

The day before, I got a call from the imaging center. She asked if I knew I was supposed to arrive 2 hours before the test, because I was supposed to drink the contrast beforehand. I was definitely not aware, though in hindsight, I should have known better. I had to drink 1500 mL of contrast before the imaging! Thankfully, it didn't taste bad, it was just A LOT of liquid. And it's meant to distend your bowels haha.

It definitely hit my GI system right before the test. At the risk of sharing too much, we'll just say it acted much like a colonoscopy prep. Not pleasant. I started panicking, because I wasn't sure how I was supposed to make it through the whole scan {which lasted 45 minutes}. They assured me that no one had ever had a problem {gee, thanks}, and I prayed really hard. {Sorry, mom, for all the graphic texts begging for prayers that I didn't embarrass myself in the imaging center LOL}. Thankfully, I made it through, but I was fairly miserable the rest of the day. 

-------

So I will wait for the results of the MRE, and I also have a dermatologist appointment tomorrow {just my usual 6-month skin check}. There are too many doctors and too many appointments...and I'm not even 40 yet! :)

{Crohn's Awareness} :: Struggling in Remission

The first week of December is Crohn's & Colitis Awareness Week. They have done various campaigns in the past, but this year they focused on an "It Takes Guts!" Award, highlighting inspirational stories of varying IBD warriors and their caregivers. While it absolutely takes guts to live with these diseases, awarding a t-shirt and a social media shout-out for our daily reality just seemed a bit strange to me. Maybe I'm just being cynical. 

But it probably highlights how I have been feeling over these past few months. I was able to claim remission back in May, which is a HUGE blessing. It came after a long 3.5 year battle. And yet, I have had a hard time identifying why I haven't felt settled in my remission. A hard time identifying why I still feel so frustrated, despite being in remission. I have certainly been thankful for it: my symptoms have reduced, and I have felt so much better than I did the previous 3 years. But I have still really struggled, and I haven't really been able to pinpoint why. 

Remission is Not the Same

Part of it is that I haven't gone back to feeling the way I did in my first remission. While I feel better, I still don't feel my best. And that's a little hard to explain to people. Yes, my symptoms are better, but they're not 100% better. My GI tract is just not the same as it was before I got sick, and I feel as though it will always be off in some ways. In addition, I have still been dealing with side effects from my medicine. When I took Humira, the side effects eventually went away. That hasn't been the case with Stelara. It seems like they're here to stay. And it has been a long, slow process of figuring out how to deal with those symptoms. Out of desperation, I'm chasing medication side effects with more medication, and it's just not a fun place to be. Especially when the secondary medication can only provide some relief, not actual elimination.

On a positive note, I am seeing much improvement on the migraine medication. I went 15 days without a migraine, and I literally cried happy tears as I went to lie down in a dark room when I got that first one after so many days. Because that was the longest I had gone without a headache in OVER a year. That length of time hasn't repeated yet, especially with all the pressure shifts in the weather, but it gives me hope that it is possible to go 2 weeks again without a headache!

Another Flare, But Normal Labs

In addition, I have had 2 flares in the 6 short months I have been in remission. Which I never had when I was in remission on Humira. I would have bad "flare days" on Humira here and there, but nothing like this. My first one was in September, and it lasted more than 2 weeks, and felt like I was right back in the thick of active disease. It eventually settled, but then a month later, it started again and lasted about 1.5 weeks.

When I met with my doctor in November, I mentioned it to him, so he immediately ran lab work. Which I appreciate so much. Turns out that my labs were completely normal; my inflammation markers were the lowest they have been since my last remission and 100% confirm my current remission {lowest recorded in Virginia!} Which is a huge praise! So we're chalking my flares up to flukes, possibly stress-related, and monitoring my symptoms moving forward. I am personally taking my flares as a gentle wake-up call from the Lord on my schedule and confirmation on my need to pull back so that I don't over-stress my body and push its limits. Message received, loud and clear :)

Processing This Remission

I don't want to seem ungrateful; the Lord has been incredibly gracious and kind to me. I am in remission! I am not sick like I was a year or 2 years ago. And I remind myself of that often. I have to. But there is a reality to living with Crohn's, that even being in remission is not simple or easy. And that is something I am learning this time around. Because my first remission was. I achieved remission on the first biologic I tried, fairly quickly, and stayed in remission for 7 years. For the most part, I felt good, going back to feeling more like myself. I did have to adjust my life, but I found a new normal that felt fairly similar to my life before Crohn's.

This remission is just so different. One biologic failed me before I found one that put me in remission, and it took 3.5 years to achieve it. I have already had 2 flares in the first 6 months of this remission. And I haven't really felt good yet. Better than when I was sick, but not really good, like myself. The side effects are almost as bad as my Crohn's symptoms, that I often question which are worse, and if remission is worth the side effects. I am having to readjust my life again, but I am finding that my new normal is looking much different than it did before. And I am struggling to process through that.

But I have to remind myself that I am only 6 months in, that maybe another 6 months and things will be different. It took a long time to get to remission on Stelara, maybe it will take a long time to actually feel better, or more like myself, on Stelara. Even though my Crohn’s is in remission, I’m sure my body is still healing from being sick for so long. Because Crohn’s affects so much more than your GI tract. And I have always had to remind myself that my health is not guaranteed. I smile to think of the words of my former boss "Every day you're not in the hospital is a good day!" And that's SO true. I am beyond blessed to have not had any hospital stays. That alone is practically unheard of for Crohn's patients.

The Lord is good regardless of my remission status. I have seen His faithfulness over and over. So while it can be a struggle sometimes, I will praise the One who cares for my every need and never leaves my side. I will praise Him for access to medical care and medicine, for an attentive doctor. I will praise Him for {even imperfect} insurance and a generous employer. I will praise Him for a supportive husband and the ability to work from home. I will praise Him for every day I am not in the hospital, for every good day I have. I am currently working on praising Him, even for the bad days, because I know that He is with me, and that I don't have to walk them alone.

Health Check-In: Migraines and a Crohn's Flare

We have been so busy the last couple of months, that I have hardly had any time for my dear little blog. Hardly any time to provide our normal life updates. So it has been awhile since I provided any updates on my health stuff.

Not that anyone is desperate for an update...but I like to keep my own records so I can look back on my own health journey ;)

Crohn's

As a quick recap...I was able to declare remission for Crohn's back in May. I had been feeling pretty good on that front, but at the end of September, I found myself in the middle of a flare. And I have to admit that it was really tough. It lasted almost 2 weeks, and it didn't matter what I ate. And all of the stress and fear and hardship of those 3 years of sickness came flooding back. I had been well for just 4 short months, and now it felt like it was all fading away again. It was really hard not to feel overwhelmed, like it was all over, and that it all meant that remission was over. 

Thankfully the flare passed, but now I am wary. And waiting for when the next flare might come. And I really hate living in this place again. When I achieved remission on Humira, I experienced periodic flares, but they didn't last quite as long, and they didn't happen so close after achieving remission. So I am scared, and I have to constantly take my fears to the Lord, trusting that He is still in control. I know He is, but I just don't want to go back. I know He is good, even if He does take me back...but I'm wrestling a lot with that right now, so could use a lot of prayer on that.

Also, super random: I have mentioned before how Crohn's affects more than just your GI tract, and for me, I have seen inflammation in my gums. I have been fighting that inflammation for several months, and most recently was recommended a prescription toothpaste to try to help. The dentist said I have healthy teeth and healthy gums, but this inflammation {which manifests in bleeding gums...so how is that healthy??} just hasn't calmed down...hence, prescription toothpaste. Crohn's. Is. Ridiculous. 

Migraines

Back in July, I was still struggling with the migraine medication that the neurologist put me on. My migraines had decreased in intensity, but I was still getting a headache almost every day. So when I met with her in August, she immediately moved me to a new medication. The complication was insurance. In order to put me on more migraine-specific medication, I have to try 2 medications first {the first one I was on was a beta-blocker, and the one I am on now is actually an anti-seizure medication}. Once I give those a worthy try, then insurance is more likely to approve the more expensive drugs. I get how the game is played, but it doesn't make it any less frustrating. 

She did warn me that this second medication was not her favorite {awesome}. It tends to have less-than-wonderful side effects, but if I could stick it out, then I might have access to some better options. So I agreed to give it a shot. The main side effect that people complain about is that it makes them feel kind of spacey and makes it hard to focus and concentrate. While I have certainly struggled with that, I don't feel like it has been as bad as I anticipated. So I'm really thankful for that. Do I like walking into a room and forgetting why, or taking twice as long to think about the task I am working on? Not really. But it makes me more intentional, and it's not that much worse than my usual tired mom-brain, so I can't really complain. 

Another side effect is that it can make you more emotional. And I have seen an uptick in my emotions. So I basically don't trust them right now. I cry more often, blame the medication, and wait a few days before I respond to situations {if I even do at all}. Which, honestly, is not a bad practice. Other than that, I have experienced on-and-off numbness in my arms and legs, which is a truly bizarre feeling. I have lost the weight I gained on the last medication, and the insomnia is also gone {praise Jesus!}

While I could do without side effects, they have been manageable enough for the benefits to my migraines. I have definitely seen a huge improvement! I would love the magic pill that gets rid of ALL my migraines. I would love to go weeks or months without having another one. But the goal on the preventive medications is to reduce headache days by 50%. So since I was at 18-25 headache days a month, we're trying to achieve only 9-13 headache days a month. And I have definitely seen that with this medication. 

It's still hard, because that has still meant about 1 migraine a week; the pain is bad enough that I have to take my rescue med. And I usually end up having to do that 2 days in a row. And that's the max I can take in a week. So if I get more than 1 migraine a week, I'm out of luck and have to power through. Thankfully that hasn't happened as often lately. But it is crazy to think that 1 migraine a week is progress and success! But when I think back to where I was... I am just so thankful for how far the Lord has brought me. That this new preventive medication is working better, with more manageable side effects, and that I have that glorious rescue med.

-------

In the busyness, I have learned that I have been pushing my body to its limits, and it's not a good thing. Since I achieved remission, I was ready to return to pre-sickness life, and I dove all in to all the things. And I have learned that I just can't go back to that level of activity. While that is frustrating in some ways, I am realizing how the Lord has gently been reminding me to slow down, step back, choose differently. So I will be fulfilling some commitments through the end of the year, but then adjusting our schedules a bit for the Spring. I just have to make different choices, even in a "healthy" state, especially if I want to stay healthy. But even aside from my health, I feel like we have just been running from activity to activity, and we have lost a good balance in our lives. So it will be good to find a better, more healthy rhythm for all of us in the Spring. We just have to survive the craziness of the rest of this year ;)

High Five for Friday!

{one} We just wrapped up a super fun week at VBS! We were all cadets on spaceship Galactic Praise, and we enjoyed a full week of astronomy, Bible lessons, slip 'n slides, silent team cheers, green gorillas, and crafts. I helped with the 2nd and 3rd graders, and each of the kids had their own group. Aiden was an Aqua Comet, Eli was a Red Shuttle, and Maddie was an Orange Rocket! {My group were Flame- Golden- Meteors}. Even our friend C from our old neighborhood joined us! The kids had a "blast" {pun intended} and basically had the time of their lives ;)

{two} We have adopted a deer! Ok, not really, but we have had this deer hanging around our yard for a few weeks now, and she basically has adopted us. She has just made herself right at home in our yard, and is {mostly} unfazed by our presence. Which, honestly, is pretty amazing, considering how our kids dance around and scream and yell whenever they see her haha. While it's not fun that she eats our plants and leaves a mess in our yard, it's pretty special to see her almost daily. We're hoping that she is getting comfortable enough that she might bring her baby into our yard soon!

{three} Aiden recently had a small procedure to have a mucocele removed from his lower lip. We have no idea how he got it {they're usually caused by mouth trauma}, but it just wasn't going away on its own, so we had to have it removed. Poor little guy had to see multiple doctors before we could actually get someone to remove it, so he had a lot of time to prep and work up his courage. They gave him laughing gas, and he was a rockstar patient! It was a little sore for a few days, and he had a bruise on the outside of his mouth for a bit, but otherwise, he's healing nicely, and hopefully we don't have to worry about it again!

{four} At the start of the summer, I had mentioned that I had started a maintenance medication for my migraines. While I definitely saw a difference in the severity of my migraines, I was still having a headache almost daily. So they went ahead and increased the dose of the maintenance medication. It has been about a month now, and I am just not seeing much more improvement. I'm not giving up yet, and I will have a follow up with the neurologist in August. But I am still having a lot of headaches, and had a pretty severe migraine recently {all the full-blown symptoms, lasted 5 days...not fun}. While the headaches don't all turn into migraines, and I'm able to manage most with Tylenol, it's still not normal and just gets in the way of everyday life. I am also struggling with insomnia and temperature regulation {I'm either really hot, like it feels like I'm burning up from the inside out, or freezing cold}. Sigh. So we'll see how the next few weeks go, and then discuss next steps at the August appointment. I knew this was a possibility; I was just hopeful I could find a better amount of relief in this first round of "easier" medications...

{five} I can hardly believe that we are halfway through the summer! We have been on break from school {though still practicing our reading}, and spending our days at the pool, playing with friends, and trying to survive the humidity. We still have lots planned for the second half of the summer, but we are already starting to see our schedule fill up with all the fall activities, and we'll be jumping into all of that before we know it :)

Happy Friday!

Health Check-In :: MRI Results

After my appointment with the neurologist, she wanted to have a repeat MRI done, since I have a history of a tumor on my pituitary gland. I also had some lab work done to check my prolactin, B-12, and magnesium levels.

Thankfully, my B-12 and magnesium levels were normal. But my prolactin levels were slightly elevated again, so I was curious to see what the MRI showed. The good news is that there was no indication of a tumor in/on my pituitary gland. And "the overall appearance of the brain is normal." That's always good to hear :)

Since my prolactin levels are elevated, I will probably need to go see an endocrinologist to see if there's something else I need to address. It could also just be a result of medication I take, changes in hormones, a result of stress from being sick for so long, etc. So for now, it will be something we monitor.

The really interesting thing is that she could see a few tiny white dots scattered in the white matter of the brain. They are nonspecific {and benign}, and most commonly seen in individuals with a history of migraine headaches. Again, I didn't need more proof of the migraines I have experienced, but I thought it was so interesting that there is actual physical proof on my brain.

I have been on the maintenance medicine for a little over a month now. I have seen a slight improvement, mostly in the severity of my migraines. I still have had quite a few headache days, but most of them have been managed with Tylenol. I do also think that has been helped by the rescue med. If I can take it in time, then it usually knocks the migraine out, which turns a once 2 to 3 day migraine into a 1/2 day one...a huge difference! I am going to give it a couple more weeks and then check in with the neurologist, as we may have some tweaking to do to help bring the overall headache days down. But I have reflected more than once on how grateful I am that I was able to get in to see her in April, and did not have to wait until September, like originally planned. 

I'm not claiming victory over migraines yet, but I am definitely headed in a better direction!

Crohn's Chronicles :: Symptomatic Remission

I can finally say it. I am in remission.

It took 3.5 years.

My symptoms started in November of 2019. By May of 2020, I was having symptoms every single day, and my colonoscopy in June of 2020 confirmed that, not only was my Crohn's back, it had spread {from my ileum to my colon}. 

I spent an entire year on a medication that didn't help. I moved across the country and had to change my entire medical team. I endured severe sickness and a suppressed immune system in the middle of a pandemic. I have fought insurance and endured side effects. I spent another year on a medication that started to help, before I switched to a more frequent dose that finally pushed me into better results.

And today I can say that I am in remission.

Usually a colonoscopy is used to confirm remission. It's the best way to see how much inflammation is still lingering and what damage may still be occurring. But since my labs look normal, and I have been {GI} symptom-free since December, my doctor has declared me in remission. He said that unless something changes, I won't have to do another colonoscopy until 2025!

If I'm honest, I still have a hard time trusting it. I was sick for so long, that "sick" was my normal for multiple years. I have a lingering fear that this is only temporary and my symptoms will show back up. I have a legitimate concern that insurance will deny my medication at the dosing that is helping me. And the reality is that I am not guaranteed long-term remission, and insurance can do what it wants. 

But today I feel good. Today insurance has said yes. I am filled with gratitude for all God has done in, through, and because of my Crohn's Disease. I am filled with gratitude for my support system: family, friends, doctors. I am thankful for the grace and patience from so many over the past 3.5 years. 

Today I will praise the One who granted me health again. The same One who walked with me on all of the hard days, who met me on the bathroom floor over and over again, and who never let me face any of it alone. 

Praise God from whom ALL blessings flow!

Health Check-In :: Migraine Management

I have mentioned my migraine woes before, and unfortunately, I haven't seen much improvement. I kept holding out, hoping that my body would adjust to my Crohn's medication and the migraines would subside. And while they haven't been quite as frequent as they were a few months ago, they're still fairly debilitating and I finally had to cry uncle and seek out some additional help.

I originally had an appointment scheduled for September because that was the earliest I could get in to see the neurologist {!} But God was incredibly gracious and a spot opened up for me to see her this week! And she is awesome. It was a really good consult; she spent a full 45 minutes with me. I got all of my questions answered, I learned a ton, and I think we have a good game plan moving forward.

Once again, it was comforting to have my symptoms affirmed. I know that I am not making them up, but sometimes I question just how bad things are, if I am just a baby about my symptoms, if I should just suck it up and deal. But based on our conversations, she confirmed that I am definitely in the category of "chronic migraine." {So I'm not just a whimp! Haha} And despite all I have tried to help prevent them, I have the deck stacked against me in a lot of ways. There are just so many factors at play {hormones, weather, Stelara}, I didn't really have much of a fighting chance haha.

If I plan to stay on Stelara for the foreseeable future, which I do, since I am feeling so much better from my Crohn's, then I will need help in combatting these suckers. So we are going to try a daily preventive medication, as well as a "rescue" medication. It may take some time to find the right dosing and drug combination, but I feel hopeful that I may be able to see some relief soon. 

Because of my history {remember Tumorthy??}, she wants to do a repeat MRI, just to rule out any other issues, and be able to say definitively that this is indeed chronic migraine. She also mentioned that oftentimes, white spots will appear on the MRI scans of migraine sufferers, so I'm interested to see if we can see that. There's no real medical benefit to that, I'm just curious :)

She's also going to check my prolactin, B-12, and magnesium. Prolactin to see if there's anything amiss from my history of a macro adenoma. B-12 because that low levels can cause migraine {who knew?!? When my GI checked my levels last year, they were fine, but I haven't been supplementing so I am really curious about that one}. And magnesium was my request, simply because I have read a lot of research that shows low levels can cause migraine {and it's not something I have ever had checked}. She said it's more of a one snapshot in time, so it's not always as telling as you might think, but she wasn't opposed to checking anyway.

So there are still a lot of steps along the way, but I am so thankful that I am able to start that process now, instead of 5 months from now. 

Here's to another health journey...

Aiden Eye Follow-Up

This cutie had a great follow-up with the eye doctor!

He did great with his exam, and his glasses are already starting to improve his eye alignment. That's such great news! When he was done, he asked the doctor, "Can I have a lollipop? because I was brave!"  :)

Rocking his eye doctor appointment

Because of Eli's history, she wanted to go ahead and get ahead of any issues early, so we are patching a couple hours a day. It definitely helps that he doesn't have to do it alone, and it has helped encourage Eli to stay the course too.

It has been a lot of work to get these kiddos' eyes strong and healthy, but I am so proud of all 3 of them for being such troopers!