So…What’s happenin’?

Hi! How’s 2020 working out for y’all? Ours is swell! Actually, of course, it could be so much worse. I know that. My new mantra(s) is to count my blessings and to go with the flow. I’m calm for all of one minute once I say these. 

Stella, who, incidentally, epitomizes “going with the flow”, is doing great.

My previous post was, admittedly, a bit frantic. We had found out that day that Stella’s Calprotectin was 1000 and so needed to go back onto medication. I was so shocked and baffled and all the rest. Somehow typing all the thoughts down was extremely cathartic. 

The reason we were so baffled was because she seemed so well — and still is! In comparison to when Stella was first diagnosed 3 and a half years ago, if it wasn’t for the Calprotectin this time round, no one would know she had Crohn’s. 

Just to recap… Stella stopped her Methotrexate in March this year after having very low Calprotectin tests for about 18 months, as well as a healthy looking bowel seen on scopes, as well as an eager mother who was desperate to get her off immunosuppressants. My reasons being: we needed to know if what we were doing with her diet was enough to manage her disease on its own; also, she struggled taking the tablets, and… COVID-19. It was perfect timing coming off the drugs this summer, having a child who didn’t fall into any of the “high risk” categories was really reassuring.  

Anyway, back to hearing the news that her Calprotectin was high and that she required medication again: following my initial disappointment came acceptance and understanding.

Stella had an MRI shortly after this day. This was NOT an easy day. The MRI itself was a breeze, (according to Stella); the hard parts were: the fasting, the cannula, and the “disgusting” drink (Lactulose). But, needs must. What it showed was: mild inflammation of the small bowel, hence the high Calprotectin. We had a Zoom call, of sorts, with one of the lovely Crohn’s nurses, who explained the findings. I was still confused as to why Stella was still asymptomatic with a high Calprotectin; she explained that because the inflammation seemed to be located in the small bowel, this was why she wasn’t having the usual symptoms: loose stool, urgency, blood. Although, to add further confusion, she wasn’t displaying any of the symptoms of small bowel inflammation either- and still isn’t! These being: poor appetite, low energy, paleness. It’s still all very strange and mind-boggling. But then, so is Crohn’s Disease. 

We asked for a repeat Calprotectin as 6 weeks had gone by without any treatment and still no symptoms. She was also still putting weight on?! Another 1.4 kg in 6 weeks, or so. We half wondered if the Calprotectin result had been wrong or perhaps the high result was due to a virus or even starting high school stress?? Stella had been off school for a few days the week prior to the test due to a sore throat — could this have altered the result? We were clutching at all straws but also for our own understanding of Calprotectin tests, we wanted to have an up to date result. We did this and the result was 800, or thereabouts. So, a definite need for medication, but also, maybe a positive that it hadn’t crept up in 6 weeks without medication (counting blessings!…) And, that was that, confirmation that she was “flaring”, there was no disputing this. 

There is a new treatment for the crohnies called CD Treat. This is an eight week food based treatment which is meant for initially reducing inflammation, in the same way that the Modulen milkshakes work. Stella had been on these milkshakes before. These are used initially to dampen inflammation; whereas the Methotrexate works by keeping the inflammation at bay, as a maintenance drug. Steroids are also offered to dampen the inflammation. 

We’re not keen to have Stella on steroids, if we can avoid them; for lots of reasons, one being she would be put into the “shielding” category for COVID-19. Which might mean homeschooling again. NO CHANCE, THANKS. We discussed the options of CD Treat or Modulen. CD Treat won. 

However…ironically, after an assessment of suitability for this, Stella was found to be “too well.” What are the chances? Because CD Treat is still under trial, there needs to be a certain criteria so that they can assess improvement over the weeks, which is fair enough. Stella didn’t meet this; which of course we’re thrilled about, but it did mean the only other option was 8 weeks of Modulen milkshakes. Darn. It.  

She was super fine about this though. I’m not sure why. Maybe the thought of being given cash by Granny n Gramps every week was enough. Or maybe the thought of not having sauerkraut every day. Whatever it was, she was OK about it. Better than me, by all accounts. 

The other benefit to Modulen, as opposed to CD Treat, is that Methotrexate can be started at the same time. With the CD Treat, because it’s a trial, no other medications can be started with it, to give a clearer picture of its efficacy. Which, worst case scenario, would be finishing CD Treat, which is a very restricted diet for 8 weeks, only to find that you need Modulen for another 8 weeks afterwards. This would, for Stella, coincide with Christmas. A difficult thought.

As I said in my previous post, the lovely nurses agreed that Stella being on the tablet form of Methotrexate again was not going to work. Instead, we agreed on an injection form.

This has started, we’re 3 weeks in, and, to my absolute relief, it is going really well. The injection is like a pen drive, a very small needle, which is intra- muscular, into her thigh. She’s even doing it herself. It’s like a night/day comparison to what she was like taking the tablet form. Folic acid is still required for her to take as a tablet which she takes no problemo. I’m not sure why the Methotrexate tablet caused so much distress, but it did, and that’s just not typical of Stella. 

So we’re all doing fine; Stella is coping with drinking her 6 milkshakes a day with eating nothing but Foxes mints and chewing gum, extremely well. Such answered prayers. She takes her milkshakes to school with no issues; probably thinks it is quite cool to have a can of 7 UP for lunch (something her boring Mum would never normally allow), and doing just fine. We’re very proud, and proud of her little sister who can’t find this easy. There’s no pudding situation going on here other than maybe a yoghurt. I feel guilty about that and, at the same time, guilty for providing the three of us something that Stella really likes, which is everything! She’s not keen on prawns but that’s about it. There are only so many prawns one can eat in a week.

The 8th December is stopping Modulen date. By that point we really hope that her Calprotectin has come right down. I can’t really bear the thought of it not being, so I’m not thinking about it too much. Stella has decided she’s going to be “King for the Day”, which involves us being her servants. Ha! That’s not actually going to happen, but what I will provide her is Chicken Pilaf which is her absolute favourite meal and on the list. That, and Lucky Charms for breakfast. Fair enough!

In terms of what I think is going on with her gut health, I really don’t know. I’ve accepted that she will be on medicine at least until puberty; I want her to fulfil her potential for growth and not risk puberty being affected. The lovely nurses have reassured me that flaring at this age and stage of puberty is extremely common. They also said that perhaps she could have another trial off medicine once puberty is complete. I’m up for this, as is Stella. And who knows, perhaps more dietary research will have been discovered, which would be great. Until then, as ever, I’m going to continue my own research, and continue aiming to feed her the most nutritious food possible, without any more restrictions. I’ll continue with fermented foods, bone broth and home cooked gluten free meals as much as I can. I’d love her to tolerate some more dairy in her diet. I’m still fairly paranoid that not having dairy will affect her, in some way, but we’ll see. We’ll try it again.

I’m hoping that she’ll continue to thrive and have no side effects from the Methotrexate. That’s going with the flow, ish, isn’t it?!

Thank you for reading. Love to you all during this difficult year.