As I hit my 47th birthday in a little bit, it's a bit sobering that the life I'm living now is definitely not where I saw myself even a few months ago. Life has taken a pretty sharp turn, really just in the last few weeks. We're definitely not finishing out the summer the way we wanted to, and honestly, our whole future seems like one big question mark right now.
As I mentioned in my last post, a couple weeks ago for whatever reason, Carter's new medicines stopped working and he descended into a pretty nasty ulcerative colitis flare. Frequent urgent bathroom visits, more blood than ever, and lots of pain became the norm pretty quickly. Then he started getting nasty rounds of nausea that led to violent, empty stomach heaves. That got more frequent over the last week, and by Friday we decided to try crackers first thing in the morning before he gets out of bed, pregnant woman-morning sickness-style. Day 1 seemed to work, so fingers crossed it helps. Nothing derails the day (or his diet) like a round of that.
He got a Cdiff test done last week and this one was negative, so apparently his antibiotics a month ago did the trick. But the bad news is that it left us without a compelling, fixable cause for the flare. Back to square one. His doctor prescribed another medicine this week, some sort of antibiotic that has anti-inflammatory properties. I wasn't sure it was working at first, but it has helped the frequency and urgency quite a bit over the last couple days. I don't know if some improvement will be enough for the doctor's liking, but if it isn't, he'll go on Prednisone for a bit. As we all know, I very much dislike Prednisone and I'd hate to know what it would do to my poor kid who's already suffering enough. So let's hope we don't have to do that.
Of course, school starts on Wednesday and that makes things a bit more complicated. Being stuck in class is not ideal for someone who has random, urgent bathroom needs. He's has some incidents and close calls lately, and those are not compatible with middle school. At all. We have a letter to hopefully get him full bathroom access without asking, but we'll likely need to put together a 504 plan or something similar to ensure he has full accommodations, like extra time during tests if he needs to use the restroom, the ability to make up work if he misses days, and maybe even cell phone access during the day in case of an incident. I have no idea how long or complicated that will be to get done. Hopefully this medicine works enough to keep it managed through at least the first half week, though. Then next Monday, he'll miss a school day because we embark on a new journey--infusions. This was the next step if the other meds didn't work, and here we are. He'll get it that day, two weeks later, and then a month after that. It'll be about a three-hour process each time, and hopefully in the long run it will only happen every eight weeks. Hopefully that will help him significantly, but I'm becoming even more aware that this could be a long, hard journey with a lot of ups and downs. We went from something that was supposedly very manageable into a whole host of unknowns, just in these couple weeks.
My therapist has been recommending I find a support group for parents like me, and I finally found an active Ulcerative Colitis/Crohn's parent one on Facebook. She thought it would give me emotional support and coping techniques. Unfortunately, all it's done so far is up my anxiety and make me realize this journey will most certainly not be a straight line. We'll likely go through multiple drugs, lots of testing and discouraging lab results, odd side effects, and sudden shifts just when things seem to be under control. He could react to the infusions--either immediately or as time goes on. He could seem like he's doing better, only to find that the med levels are too low and he's showing antibodies (which from what I can tell means he's fighting off the medicine). He could have lots of hospital stays in his future.
I had a conversation the other day with a work colleague because I found out he has Crohn's. My closest prior experience to anything of this nature was that my high school boyfriend had Crohn's, but he didn't have a flare when we were together. I remember him being hospitalized and out of school a couple times before that, and I knew he had a lot going on. He sometimes looked a bit gaunt, and when he came back he sometimes had that steroid puffiness going on. You'd never know from looking at my colleague that he had this going on, but he works very hard to keep it that way, with a very strict diet. We had a good chat that was equally encouraging and concerning. He felt confident we'd find a good treatment and get Carter back on track. But he shared about his hospitalizations, some medication struggles, his very strict diet ("he should learn to love grilled chicken--it will be his friend!"), and his thankfulness to still have all his intestines and to not have a colostomy bag. Those are not high bars, though, so it does make me worry about what Carter's future might look like. This guy does need to have a minor surgery coming up that might involve a temporary colostomy, but it sounds like the surgery will be worth the long term benefits. Carter continues to plan and dream about the day he can have dairy again, and not only do I not know if that will happen, but I can't help but wonder if he'll need to give up gluten and/or fried and spicy foods, as well. He's such a food kid that I know those things would be so hard. We're struggling to come up with foods right now as it is, let alone with more limitations.
I won't even let myself Google most things right now. I know every drug is going to have bad possible side effects and I'd rather let the doctors tell us the most likely ones. As Jacob has taught us, there's a fine line between educating yourself and knowing too much, and I just can't go there right now. This is already a lot to manage, and I just can't add in more problems my anxiety creates for itself. Thank God I'm on my anxiety meds right now, though, because I know this would have certainly done me in. Every bad poop, every nausea/vomiting session, every round of pain, every test result would have put me in a new spiral of hell. Not that I'm not already struggling, but it would have been exponentially worse. For every deep breath and nervous stomach moment I have now, it would be a thousand times stronger. So much of what I worried about with Jacob were my brain's creations. This is a very real health threat with very scary possibilities, and I don't know that I'd get through without my meds.
Needless to say, all of this has been a bit of a surreal shock to the system. We went from something frustrating but hopefully manageable to something that is clearly going to be a long-lasting, life-altering issue. I'm so worried about school right now, and baseball too, since that starts this week and the bathrooms are awfully far from the fields. I just hate that Carter needs to deal with this at all. He's been such a trooper and yet I can tell this is wearing on him. He looks so skinny and pale these days, and the pain has been a lot at times. It's hard to see him have to be stuck at home and really only venturing out to hit some baseballs, which thankfully he still has the energy for. This is definitely not something a kid entering puberty wants to deal with.
As much as I struggled with the title of being a mom to a kid with a chronic illness since Jacob's Celiac was generally well-controlled, the past year has challenged that (even though none of Jacob's stuff really became anything of note), and now this has absolutely solidified it. My future is going to be one of endless worries, endless shuttling to appointments and labs, managing med lists and working through infusion sessions. I never imagined we'd be here, especially since we only found this when we did by total accident, as it was only after the initial blood work full of inflammation did the GI symptoms really get going. Some days I just don't know how we got here. I know it could still be way worse, but I am struggling, no doubt. I just want two healthy kids and it feels farther out of my reach than ever. Sometimes I want to tell my therapist that I think I need a break because literally nothing is going to feel fully better until I feel like my head is above water again with all of this, and I just don't have the energy to fully work on myself right now. I'm taking it one day at a time because we have to with this changeable mess of symptoms, but it's going to get really real in the next week, and it's making the first week of school harder than ever. Normally I'd be a little relieved to get my quiet house back, but all of this PLUS getting up early and packing lunches (for two very tough-to-feed kids right now) is probably going to be harder than the summer chaos. I'm sad, scared, and desperate for my kid to feel better.
And amidst all of this, I'm now officially heading into my late 40s. And I thought peri-menopause was going to be my biggest medical challenge at this point. Ha, joke's on me, I guess. More birthday thoughts coming soon...