New year, new excellent Calprotectin!

Hi, lovely readers. You’ll be pleased to know that this blog post is about Stella. Not about me, Anxious Annie/ Mad Mary.

Stella’s Calprotectin is 60! So pleased. Kind of can’t believe how quickly it has dropped from 1000 to 60. However, not really understanding how they work, maybe this is normal? Anyway…what this means is that Modulen works well for Stella. There’s much more talk now about gut dysbiosis; we were told at the last clinic appointment that her latest flare was to do with the bad bacteria guys taking over the good bacteria guys. When you read about Modulen, and it’s benefits, there’s not much literature around how it actually works. I believe it contains anti-inflammatory properties and allows the gut to rest, in a sense, because there is no food to digest, only liquid? What baffles us though, is the amount of sugar one consumes on Modulen. Modulen itself is high in sugar, not forgetting the chocolate syrup that goes with it; the 7UP (although Stella doesn’t particularly have much of) and the Foxes Mints (err, loads). So I am confused, given that sugar encourages the bad bacteria guys, does it not? So of course we’re delighted, but we remain confused, a bit.

I should ask more at hospital appointments when we’re there; I guess I’m so distracted by what’s happening there and then that I don’t feel I can. I need to stop being so British and just ask more. Maybe next time…

What does a Calpro of 60 mean, exactly?

It means no need for steroids. Which is what I was worrying about. It means that the Methotrexate injections are doing their job, and that they’ve to stay. We’re now calling it Metjet, which is the name of the injection. The word Methotrexate isn’t welcome here. This sounds slightly ludicrous, I know, but, and I keep saying this, Stella (unlike me) is so laid back, reasonable, logical. She’s traumatized by the Methotrexate tablets, and so we’re trying really hard to separate the two. The injections were going well, up until recently, sadly. She is not finding it easy. It’s once a week, again on a Friday, in case side effects affect her schooling. My phone alarm goes off at 1900, and it’s time. She was physically sick on Friday prior, and it is prior, which means that it’s psychological. It’s heartbreaking for me to watch and on Friday there I removed myself and allowed Mr Calm (husband) to take over. Knowing that my being on tenterhooks was certainly not going to help anyone, I took myself to my room. Clearly, I’m also somewhat traumatized by the Methotrexate tablets. My husband, in the end, gave her the injection. She then came upstairs and laughed, quite insanely sounding actually, at the fact that “Daddy wore the yellow marigolds to give me my injection.” I didn’t care. I was delighted that she was laughing.

In terms of feeling nauseated the next day, I think there’s less of that on the injections, as opposed to the tablets, which is brilliant. So who knows, maybe it’ll get easier for her, I truly hope so. But as my sane friend reminded me, Stella takes everything else in her stride, maybe I ought to allow her to find this hard; to almost just accept that this is going to be difficult for a short while on a Friday night. Makes sense. I just find it so difficult to watch. Perhaps we could both do with hypnotherapy/ counselling/ knocks on the head…

Food wise: can’t wait for January. Since Modulen has finished, it’s been a diet of gluten free and dairy/lactose free foods; but also: After Eights, Lucky Charms and Sugar Mice. Clearly it’s fine because it’s short term, but I’m looking forward to bread/ snack making again, searching new recipes, and aiming to feed her, and the rest of us with actual food — that doesn’t contain 15 unpronounceable words! And fermenting again! Sauerkraut with turkey didn’t happen. 

We’ve started Stella on new probiotics. These are called Livespo Colon. Each one comes in a little vial which she drinks after a meal once a day. So far, so good. This was started after the Calprotectin was taken, so I doubt this was the magic cure. 

Stella is, by the way, still perplexed by all of this. She insists that she feels no difference with a Calprotectin of 60 than when it was 1000. I notice that her cheeks are rosier. That’s about it! 

We know though, that had she been left, without intervention, typical Crohn’s symptoms would likely develop, and we don’t want that. We started watching the documentary “Strictly Amy: Crohn’s and Me.” We switched it off after two minutes: it was not a nice watch, although brilliant that Amy hasn’t let Crohn’s stop her in any way. Thankfully, Stella said something along the lines of “well that’s not anything like my Crohn’s.” Which is great, and hopefully will always remain that way. 

Thank you for reading. Here’s to a far happier and healthier 2021 for all!