Crohn’s at Christmas : Joyful but stressful?

Hi! Happy new year. Has been a while…

Christmas, surely, as joyful as it is, is always going to be stressful ish, with/without IBD. My particular stressors though are the seemingly infinite kids’ parties which pretty much all involve the lovely beige, gluten laden food that’s so sodding yum scrum but sadly awful for Stella and all the other lucky ones with gluten and dairy intolerances. And so, when a wee partie was coming up (and there were many!) there was of course the need to see what food was going to be provided, so I could try to replicate it with Stella friendly similars, so that she didn’t have to sit with her Bear YOYO whilst everyone chowed down on a sausage roll, etc. That said, it all went really well. I didn’t even make her have sauerkraut at any of these events, pretty sure that would have been just mean.

Parties, hideously late nights, shop bought gluten free, highly processed alternatives galore; she, and us, had a great time. FYI, gluten free mince pies are delish. 

What slightly worries me though is that with this highly processed gluten free alternatives binge, full of emulsifiers and other not- so- lovely unknown ingredients, it may not have been brilliant for her wee gut, but, as always, balance is key, isn’t it? And she did have so much fun: there was no feeling of left out, nor simply hungry at parties because she couldn’t eat anything. Therefore, I’m pretty sure a blow out of “junk” food and the odd Irn- Bru (shocking!) won’t have done much harm. My liver on the other hand, a whole other story…

What’s been happenin’?

To get you up to speed with the goings-on since my last blog post pre Summer: Stella is still doing great, and she still has a very low inflammatory marker which means that her Crohn’s is well under control. She is now 11 and in her final year of primary school (sniff, sniff).

 A brilliant year is being had by her and her pals. Her year group went away with the school to a residential week which was, by all accounts, completely successful. They catered for her dietary needs with no issues: all that was required was a phone call or two to me prior, to confirm what she could/couldn’t eat. They all had a ball. The idea was that they spent as much time outdoors, climbing trees, building dens, canoeing etc and apparently not washing for the week! Stella was in her element and returned suitably red cheeked — and manky!

The calprotectin (inflammatory marker) happened to have been checked prior to this week away and so knowing that her Crohn’s was OK I suspect made us all a bit more relaxed about her going away. Any “tummy pains” or similar we could confidently put down to nerves or something else entirely. The calprotectin result was exactly the same as it was in June: less than 30, as in zero inflammation.

Currently, Stella is still on Methotrexate but it is still the same dose as she started with two years ago, and we are hopeful that this may be able to be stopped this year. Right now, we are waiting for Stella to have a colonoscopy and endoscopy as requested by the hospital team. This will see microscopically what the gut is doing because, despite the calprotectin being low, before the medication is taken away, the Crohn’s team wish to rule out ANY inflammation that may be lurking under the microscope.

This though, rather frustratingly, seems to be taking a lot longer than we first thought. Staff sickness and annual leave during winter months means that there is a long waiting list, and so we are unsure when they will be. Stella’s scopes are elective, as opposed to an emergency need, therefore we aren’t a priority, which is fair do’s. We were told in October that they would be before Christmas but unfortunately that didn’t happen, which is fine, clearly wasn’t meant to be. It also gives me time to perhaps get back to “normal” gut friendly eating habits and early nights, which, I reckon, must impact inflammation. 

I am nervous re the scopes, quite a lot hangs on the results. As I’ve mentioned before, Methotrexate seems to be effective in Crohn’s management but it does have it’s scary long list of potential side effects, none of which I wish upon anyone. It’s difficult because we just don’t know how much of the Crohn’s is being managed by the drugs, or the diet/lifestyle. I, up until last year, assumed it was a nice combination of them both, probably mostly the drug if I’m being honest. However, since the calprotectin reduced fairly dramatically in one year from 170 to less than 30, with no change in drug management, but a further change in the diet (fermented foods being the biggest change to the existing gluten free, low dairy diet), we can’t help but wonder what role the drug is playing? Given the horrible, potential side effects and also, sorry, the fact that Stella still physically hates taking them (!), we do feel it’s worth a try to see if her wee bod can cope without them. 

The lovely hospital team is being very supportive and, despite probably wishing we would just carry on taking the drugs seeing as Stella is so well, is willing to back us up and do what’s required safely to try. This is why we are awaiting scopes: if the scopes are good and clear, then we can trial off Methotrexate. 

However, and this is annoyingly, rather huge, it’s not as simple as re starting the drugs if Stella doesn’t do so well without them. We will know this from the 3 monthly calprotectin tests and/or her symptoms. Methotrexate is a maintenance drug and so if she is having a flare up, unfortunately she will require something else to reduce the inflammation. This would be either steroids or going back to 8 weeks of Modulen (the milkshakes and no food), then going back to Methotrexate.

 The thought of this is really quite horrific to me and makes me feel panicky even writing this. We don’t fancy her being on steroids and the 8 weeks of modulen will be ludicrously hard I’d imagine, third time round, if required. Stella, however, is 100% up for it. She is willing to take the chance if it means coming off the drugs. We are backing her all the way. I have to think positively and hope that it just won’t come to that. If it does, we can’t see it as back to square one again but simply that it’s not the right time to come off medication. I just hope though that I won’t become overly obsessive this year (hahaha) with what she eats more than I already am, knowing that there isn’t the “back up” of the Methotrexate. We are very sensible and follow the diet that suits her well, but, I wonder if we might not get away with the “Christmas binge” so well this year if there are no drugs on board. I guess we just have to see. 

Please wish us luck then, eh?!

 I hope that this has helped others who may still be in the throes of modulen, medication, flare-ups and all the other difficulties Crohn’s kiddies face. We’ve since met a lovely family and going to meet another one soon who are both at the very beginning. I wish so much that they feel reassured that things can improve. Hopefully, for us, just now, we can have a managed Crohn’s with no drugs. That’s the dream anyway. We’ll just need to wait ‘n’ see.