A little lockdown update, perhaps

Hi all, hope you are all well and coping in this strange time. 

I am filling my day with cooking and baking and generally doing anything to distract me from homeschooling and breaking up fights, hence also this.

It’s been a few weeks since Stella stopped Methotrexate. I would think by now that it is well and truly out of her system? If so then, so far, so good (she says, tentatively).

I decided to even start my Insta page titled Usvcrohns. I really hadn’t planned on doing this until at least 6 months of zero drugs, however, it’s started, and I am enjoying sharing recipes and pictures of what we’re doing- as opposed to pages of written drivel.

One good thing re ALL the Coronavirus chat going on is that I’m probably not as obsessed with Stella’s Crohn’s as I think I would be if there wasn’t such a hideous pandemic going on. I’m going with the theory that surely there’s only so much anxiety one brain can take? That, and I’m doing lots of praying and drinking, which helps.

We received an email explaining that Stella was categorized as high risk to Covid-19 — a stark reality check. Coincidentally, that same day, I received another email from the health board asking for ex nurses and midwives to consider volunteering to help. I debated for a while; I considered doing a night shift or two, but, I was given a row from my husband who “politely” reminded me the reason why I stopped in the first place: too risky to Stella. Also, I’d been out of midwifery for such a long time, therefore, likely I would be much more of a hindrance. Still, I feel extremely proud to know so many people working for our NHS, and thank them, as we all do, from the bottom of our hearts. 

Anyway… I think I’ve digressed…so yes, Stella seems completely well. She is LOVING the fact that her Friday nights aren’t taken over by Methotrexate. We’re even allowed to mention the word again in the house, although clearly not really needing to now. She’s happy, she’s full of energy (too much sometimes, bit annoying) and, despite having me as her “teacher” (haha!), seems totally cool re lockdown, which seems odd, but we’re going with it. 

Another positive side to lockdown, I guess, is that there’s no opportunity for Stella to go on a mass sugar binge with her friends! I don’t imagine that her wee tum would like that very much. Don’t get me wrong, we’re still allowing sugar, my goodness, but not an enormous ton at once. It is quite nice to know exactly what she’s eating and also having the time to avoid most highly processed gluten free foods, for the time being. I’m managing to make bread often enough so that she doesn’t need to eat shop bought gluten free bread; fine sometimes of course, but does contain quite a lot of ingredients, some of which I can’t pronounce. Please, however, don’t be put off: I usually don’t have the time to make bread this often (despite not working), Stella will have gluten free shop bought bread fairly often, or she’ll have gluten free oatcakes, wraps etc.

Snacks: tricky when you’re avoiding nuts, gluten, dairy, sugar, overly processed food — aaargh! Hence, the sharing of snack ideas on my Instagram page. And they’re really easy, I am not a baker and needn’t be when it comes to the snacks I’m making. Again, though, please don’t think that we “eat clean” all the time, we certainly don’t. Gluten free granola bars etc are a weekly supermarket staple; we just have to watch for nuts due to her nut allergy. This can be challenging as so many gluten free products contain nuts, therefore, sometimes it’s easier to make them myself.

So, who knows how this will all work out. As I said, Coronavirus is at the forefront of my mind, but on a personal level, I hope so much that Stella continues to thrive and avoids having to go back onto drugs. Our first appointment, post stopping drugs, has been cancelled, and so I’m not sure when Stella’s Calprotectin will be tested again. I’m just keeping my beady eye on her; subtly asking about her bowel habits, but, at the same time, not wanting to remind her too much that she hasn’t the medication back up, and thus freak her out. I’ll continue to do enough of that on her behalf. 

We will, for the foreseeable, continue to feed her a diet which hopefully continues to suit; with the added extras of probiotic supplements, as well as fermented foods, as well as a daily vitamin to ensure an adequate intake of calcium, iodine, vit d, and all the other potential deficiencies a dairy free diet can lead to. It’s quite a bit to think about but entirely normal for us now, and so worth it.  

I’d love for you to follow this now on Instagram too. It’s called Usvcrohns. Thank you. 

I do hope you all take care and stay well, or get better very soon if you are not.