2 (nearly 3!) months of no drugs – and no drama!

I write this title super tentatively. I actually thought it was 3 months when I started writing this (I think that’s the lockdown effect). However, we’ll be 3 months soon and from what I can see with our girl, there doesn’t seem to be any signs telling us that she needs to go back to medication. Thank goodness.

Currently, as I sit here, wishing I was 11 years old again, Stella is outside playing on a self-made “Slip ‘n’ Slide” using the sides of an old gazebo (obviously), a hose, body boards and washing up liquid +++. What can possibly go wrong? Screams carnage, yes, however, she and her sister are, at present, happier than pigs in ****. 

 As I said in my last post, Stella’s appointment post coming off drugs was cancelled, due to the Coronavirus outbreak. So, actually, we don’t know what her Calprotectin is. What we do know, however, is that she is growing taller; she is putting on weight (we think, we, rubbish parents can’t remember exactly what her last weight was) but we doubt she’s ever been 38kgs. We’re not obsessing over her weight, she certainly doesn’t fit into her summer clothes from last year, so that’s a great sign. Her attempts to put on her age 11-12 wetsuit to “surf” down the slip n slide, are hilarious. She’s rosy cheeked, has boundless energy and zero loose stools, nor hip pain. And she’s got a tan, of sorts, freckles too! The first ever, thanks to not feeling the need to smother her in factor 50 as soon as there’s a hint of sunshine, which was what we felt we had to do on Methotrexate.

I reckon, despite not knowing what the Calprotectin is, that all is okay.

Truthfully, the thought of waiting for the results of said test, fills me with such anxiety that I’m kind of glad we don’t need to think about it just now. I don’t half get my knickers in a knot over waiting for results. I wonder if this stems from fairly dreadful higher results at school. 

So all in, things are good here, Crohn’s wise. Homeschooling wise, not as joyful. We do enough, but I’m very aware that stressing isn’t good for anyone, let alone someone with Crohn’s, or any gut related issues. Much more important to focus on well-being I say, during all this, and blinking play – playing outside especially. Being a bit filthy and not washing for a week (them, not me) all should, hopefully, help that little microbiome of hers become more diverse. I feel really fortunate for having a garden. I feel really sorry for those in lockdown who haven’t. 

My Instagram page (Usvcrohns) is, I think, going well. It’s nice to share photos of what we eat, as bizarre as that sounds. I’m enjoying nosying on other people’s pages who are following a similar diet to us, for their ideas. (Clearly, you all know how Instagram works.) The only thing that I can feel slightly anxious over is when I see other Crohn’s adults who follow an even stricter diet than us (gulp). They have perhaps gone full on Paleo which is similar ish to ours in that there’s no gluten or dairy, but the main difference is no grains. So not even rice, pasta, gluten free or not, bread etc. No thanks. I don’t think we could do it. I think it wouldn’t be enough calories for a wee 11-year-old surf ‘n’ slider for a start, but presumably fine for an adult should they need to. Nuts are a big protein intake in the Paleo diet, and we can’t have them here, therefore, fully justified that we are not going to try this way of eating any time soon. Also, and I must keep remembering this, everyone’s Crohn’s is so unique to them; ours was diagnosed at an early age, therefore almost “caught” and treatment started quickly. Unfortunately, I reckon so many people were diagnosed at a later stage and therefore possibly potentially more damage done? Is this why an even stricter diet is required? 

We’re not out of the woods. I know this. It’s been a long 2 (nearly 3!) months since stopping the drugs. I assume would’ve felt faster had we not been imprisoned in our home! But the longer time passes, and no symptoms show, the more confident we can be that possibly this can be diet led for Stella. We just have to keep going to see.