Limbo: I dislike you immensely

Hi!

Has been a long time since I’ve been here…hope you are all well! 

Things have overall been great, Crohn’s wise – I think? 

Stella is 14 now which I can’t really believe. It has been 5 years of Crohn’s, and she is still handling it like an Absolute Boss. I’m currently laughing to myself about how many times during these 5 years I would have asked Stella the question – with trepidation, and completely faked calmness: “How are your poos, pet?”… At least once a day for 5 years is an awful lot.

Currently, we are in a state of limbo, hence the late night blogging, and hence the title. As you know I love/ need to write down thoughts when feeling anxious, and right now I am a bit anxious. My darling Crohn’s teenager, for your reassurance, is not anxious at all.

 Stella has grown into a young adult who, amazingly, is very laid back. Admittedly this infuriates me a lot of the time; nagging her/ reminding her to do the basics: teeth brushing (true story) is my full time job. However, she’s my lovely laid back teenager, and I adore her, and I’m genuinely delighted that she isn’t terribly anxious.

A year ago, around this time, Stella’s medication changed from Methotrexate to Adalimumab. This was partly due to a mild flare up, which begged the question of whether methotrexate was becoming ineffective. I do think this was a “meant to be” flare up, which sounds nuts, but I, as Mum, needed a push towards changing the medication.

Methotrexate was still utterly awful for Stella, you’ll maybe remember previous posts talking about the side effects, vomiting being the most obvious one. It was awful for her, but yet she carried on, like the trooper she is. I was reluctant and frightened of Adalimumab, thanks to Google.

 I’ve since stopped going down the “rabbit hole” of information out there. Having some knowledge, yes, but hours spent reading other peoples’ stories, without knowing background information, is unhelpful, and damaging to mental health! During this time Stella was willing to carry on Methotrexate, despite the horrendous vomiting before and after the drug. A high ish Calprotectin result of 400 forced the switch of drugs, which did need to happen. This Calprotectin result wasn’t terribly high for Stella, but warranted a change in treatment nonetheless. Adalimumab thus became the new drug.

What a difference! What was a Friday night of misery, for everyone, is now a fortnightly on a Friday, 5 minutes, of Dad giving her the injection, while I sing, or dance or do anything to distract, all the while reminding her to wiggle her toes. It’s a sore injection, sorer than Methotrexate. Wiggling her toes whilst receiving it is apparently a must. And that’s it: no vomiting whatsoever, not even nausea. It’s so easy now that I’m scared we forget to give it; I have a Post It note which I take out to put on the kitchen work top on a Thursday; reminded by the reminder that pops up on Google Calendar. Our phones are also set to alarm. Still neurotic? Absolutely, but we haven’t forgotten yet! 

Adalimumab isn’t without any side effects, of course. Since starting, Stella’s skin has been a bit problematic with an eczema type reaction. It’s not a huge problem, however, if she doesn’t apply her creams daily, and bathes with emollients, her skin can break out. An antibiotic orally was required earlier this year because of it, which re gut health is something that I’d prefer her to avoid, but clearly it was needed. So you can imagine this daily cream applying requires a lot of nagging/ reminding…

Despite this, Stella is happy. She’s her own person, is independent (not really); loves days out with friends, loves to paddle board; loves to still play outside – which I love to see. She’s very outdoorsy; she goes to athletics, runs very fast, and she still goes to aerial yoga, which is so good. Most importantly though, is that she has an excellent sense of humour. I think having a chronic health condition, without a decent sense of humour, would be hard. She laughs at me a lot, particularly when I’m tiptoeing behind her with emollient creams to just slap on at any opportunity; she mocks me, which I love, and so I remind her frequently that there will be payback, if and when she’s ever a Mum herself.

We have a bond of which I am so proud. It’s different now, parenting the 14 year old with Crohn’s is far harder than parenting the 8 year old. I controlled what she ate back then, no question. Now…it’s a lot up to her. I still cook everything from scratch; I still make her a pack lunch; it’s all still gluten free, dairy free, nut free, organic (if poss), minimal processed, probiotic, prebiotic (!) The difference now is that she’s out, socialising, which is brilliant, but I don’t know what she’s eating during these times, and that needs to be OK.

Back to the limbo…right now I think she might be flaring, despite still being on Adalimumab. As ever though, Stella appears very well; she’s growing, she’s putting weight on; she’s red in the cheeks; she’s still going to school everyday, and doing all the extra curricular stuff; but she’s having some mild symptoms which, knowing Stella, can be a sign of a high Calprotectin. Coincidentally, these little flares tend to happen at this time of year. I wonder if it’s post summer hols/ back to school anxiety that can cause this for her. Stress is huge for Crohn’s. And, despite me banging on about how laid back she is, going back to school after 7 weeks of pure fun, is enough to make the most laid back kids a bit nervous.

 So, we’re in limbo because a Calprotectin has been sent off, with no results yet. I’m not biting my nails as such, I’m just a bit anxious and sort of thinking that I hope things don’t need to change much with her medication. Diet wise, I’m purposely trying to feed her just now a slightly different diet during this “flare up.” This is not recommended by the hospital team at all, again this is just me, trying to do what I think might be sensible. I read about following a more bland diet when your body is in flare; so not to further aggravate, this involves things like chicken, fish, rice, mashed potatoes, bone broth soups, peeled, cooked vegetables, etc. This, when you’re used to cooking lots of variety, is hard. Of course, Stella is loving this. Her favourite food is literally rice so this is great as far as she’s concerned. I’m just hoping that things will settle and the result of Calprotectin will be OK. But until then, there’s not much we can do other than wait and see.

Tonight, when I went to say goodnight, I was met with a very loud noise, which made me jump out of my skin – and Stella in hysterics. This was the result of the “fart machine” that friends of mine bought her as a recent birthday present. So thanks for that, you know who you are. But it’s ever so nice hearing hysterical laughter from your teenager when they go to bed, reminding me, again, that she is handling this beautifully. 

Thank you for reading! Prayers all round please for continued stability here, and to all of you! Hugs, hugs, hugs.