Baffled and gutted.

Hi. It pains me to write this. And I write this with a glass of wine beside me, incidentally while the rest of the family laugh their heads off (including Stella) watching Teen Titans, or some guff. Anyway, get to the point, Mairi. 

We’ve been told today that, after 7 months, Stella needs back on medication. Gutted. 

Her Calprotectin (inflammatory marker) is up at 1000. 

I can’t actually get my head around this because she seems so WELL. It’s truly baffling and I keep thinking that maybe they’ve got it wrong, somehow. 

Since the last post, Stella has started high school- this has been brilliant so far. She’s happy, confident, chatty; still putting on weight, she’s rosy cheeked. Since starting back at school 5 weeks ago, there has been the odd, isolated, mild loose stool, only. No hip pain and no lethargy. I put it down to maybe nerves, viral? It did of course worry me but I didn’t think for a minute that her Calprotectin would be so high. 

What’s also gutting is that the sample was handed in 3 weeks ago. I adopted the ol’ “no news is good news” when I hadn’t heard the result. I know in the past when it was high I received the phone call after a week, maybe? I know though they’re so busy, I get it. I get that there are lots of very sick wee kids with Crohn’s and Colitis that they are dealing with. And also through a pandemic. 

What was also hilarious (not really) was when I phoned the GP yesterday to ask if maybe they knew the result. The very lovely receptionist told me it was 30! I naturally almost jumped for joy, phoned my husband; then had this sinking paranoia feeling that perhaps this was an old result. It was. She had informed me of last year’s result. She was apologetic and lovely and helpful, putting me through to the gastroenterology receptionist at the hospital. This was when I started to wonder…why did the receptionist want the consultant to phone me? Why couldn’t she just read it out? Policy? Or a not so good result? 

This morning I received an email from the Crohn’s nurses saying that they were very sorry but that the Calprotectin was higher than expected and Stella would require medication again. I doubt I need to explain the feelings. My biggest worry was telling Stella, and her immediate panic at the thought of having to take Methotrexate tablets again. I understand completely that she had reached the end of taking these. It had become a psychological issue: almost to the point of panic attack. You may think that a child of mine is of course going to have anxiety issues, but Stella does not. She has (thank The Lord) her Daddy’s far calmer and laid back personality. I emailed back explaining that I felt gutted and shocked at the result and desperately worried that Methotrexate tablets would be on the cards again. I did my best to plead for this not to be the case, at least so that I could reassure Stella. Thankfully, they responded promptly to my email, saying that no, they wouldn’t put her through that again, and agreed that perhaps Methotrexate injections would be a better option this time.

Of course, as I well know, Methotrexate is a maintenance drug. Therefore, Stella would require either Modulen, steroids or a new treatment called CD Treat, to initially, and rapidly, reduce the inflammation. This choice, I know, being 12 years old now, is up to Stella. 

My husband and I met for a coffee, while Stella and her sis were looked after by my sister-in-law after school. The purpose of this was for me to try to reach a 180 degree turnaround of my mindset before telling her. I couldn’t be, and didn’t want to be, the Crying Wreck Mother Figure. I know that if I’m fine, Stella’s fine, and vice versa. We chatted, I cried, and reached the conclusion that actually, it’s all fine. We achieved 7 months of a drug free, very relaxing summer, and still have a very well child. Yes, the result is high, but she is clinically well, and happy. We have a Calprotectin that is HALF of what it was 4 years ago when we started this journey, and back then we had an ill child, not one prancing around in fancy dress because she’s making a movie with her cousins. And, we know we could have it so much worse. 

We got home and sat Stella down. I explained the goings-on. Of course, she cried, but very quickly was okay. She’s beyond reasonable and stoic and just so loveable and awe-inspiring. As is my other wee treasure who was feeling all this too. 

I’m so proud of them both. I know Stella will be fine. I will pray specifically that her transition back to remission is a smooth one, with little bumps, please. 

We’re due a MRI next week and a Video call too with the consultant. I know they won’t hesitate to commence a plan as soon as possible. Meanwhile, I’m not stopping anything food wise: I must believe that what she’s been eating hasn’t been a waste of time. That perhaps if we didn’t omit gluten, dairy, that she would be worse. I’m going to carry on fermenting, giving her probiotics and providing her with as nutrient dense food as possible — that she loves!

I know the next few months aren’t going to be easy. But, we’ve had worse, and coped. And (arguably) stronger for it. I’ll keep in touch with how it’s going. I’m interested to know how other people have managed with the CD Treat, and also steroids, and Methotrexate injections. Positive stories welcome, please!

Thank you very much for reading and I’m sorry that it’s not great news. I feel positive though, that she’ll get back on track and her Calprotectin low again, with a bit of medication and a diet to suit. Maybe one day, she might not need medication, who knows, but until then, she’s got us: including one neurotic but fully committed Mum, who adores her, and that’s what counts, doesn’t it?