Fear of the unknown, and the downside of the internet.

Hi, all,

Has been a while…

Hope you’re all doing okay and coping with, what seems like, this never-ending virus.

We all tested positive for Covid back in February, which I don’t think I have mentioned in a blog. I’ve been very lazy and actually, I guess there’s not been huge changes in Stella’s condition, which is good. 

Covid wise, guess who was the least unwell? Stella, without a doubt. All that worrying about the unknown at the beginning, for nothing (I should learn from this – but I likely won’t). 

While the rest of us were alternating from our beds, to shuffling around the house resembling scenes from The Walking Dead, Stella was absolutely fine, alternating from telly watching, to gaming – not looking after us, may I add. Anyway, I was delighted that she remained well throughout, despite the Methotrexate. 

Crohn’s wise, this year, she’s had a pretty good run. At the beginning of the year, Stella was put onto weekly 20mgs Methotrexate injections, this was because she had a flare up this time last year, following her 7 month period off all medication. She quickly re-entered remission after the Modulen milkshakes, and was put back onto Methotrexate, the preferred dosage at this stage being 20mgs. This dose, however, eventually proved too much for her body to tolerate: regular vomiting following the injection; one scary night of black, tar-like vomit (sorry, TMI). We therefore needed to inquire if lowering the dose would be an option. Fortunately it was agreed that 15mgs would be more appropriate.  

We decided during this that Stella would perhaps benefit from some hypnotherapy. She was becoming very frightened of the injections; would delay them, which, in turn, made the whole thing worse, building up more and more cortisol in the body. Whilst she was vomiting afterwards, which we knew was a direct result of the medication, she would often, as a result of so much anxiety beforehand, vomit prior. It was, and can still be, very difficult to deal with. (Hence wine.) 

The hypnotherapy worked well. Stella had about 5 sessions; there was a lot of talk regarding the Chimp Brain, something which I had heard of, however, hadn’t studied it much. The hypnotherapist worked with Stella to teach her about this pesky Chimp Brain, and how to control it when it rears its ugly head on the day of the injection.

 I do think it worked well, we certainly have had lots of drama free injection days since. 

It still takes 3 of us; my husband does the injection, whilst Stella stares at me, in distraction desperation. We watch a TikTok video together, or I attempt a funny joke (which is a distraction anyway as I attempt this). If there is no build up of panic, and we time it right, as in a few hours before bedtime, thereby when the “methotrexate hangover” kicks in, and she’s asleep, then there’s no vomiting. This is a huge success. 

Thankfully, when there is some degree of drama, Stella bounces back superbly. She can be vomiting, and have had hours of panic prior, then 15 mins later, is completely well, and carrying on with her sister, or her Dad. While I’m deep breathing, alone in the living room, trying to think yoga, as opposed to my usual relaxation technique. 

It’s a “hit or miss” situation. Since hypnotherapy and reducing the dose, there have been more “hits”. That said, more recently, unfortunately there have been misses. It’s pretty heartbreaking because we know that this is just something that she has to deal with, for a long, long time. I’d love to think that diet and lifestyle alone can help control Crohn’s, but I don’t know. It’s perhaps more realistic to think that diet and lifestyle will work along with medication.

We had a video call from one of the consultants the other day to check how things were going. I’ve decided it’s almost impossible to know really, without a Calprotectin test. I’ve lost confidence since this time last year when Stella displayed no obvious symptoms, however, had a very high calprotectin.

 We had a video call this summer, and no calprotectin was mentioned, the consultant was happy with how Stella seemed. This time, however, because it’s been a long time since checking, a calprotectin was requested. Annoyingly, though, this happens to be following her flu vaccine, which was this week. I’m unsure if it makes any difference, however, if it’s a high result then I will request another one in a few weeks time. Another reason for it being now, as opposed to in a few weeks, is to tie in with another video call with the Crohn’s nurses in two weeks time. 

During the call, the consultant mentioned another drug which could be used, instead of Methotrexate, if Stella decides that Methotrexate just becomes too much. This other drug is called Humira. 

Naturally, as any mother would, that same day I typed Humira into a Google search to suss it out – and wished I hadn’t. I subsequently stayed on Google for about 3 or 4 hours, desperately searching for a drug that might be safer. I can, far too easily, become wholly immersed in searching for reassurance. As you know, I suffer from health anxiety anyway, therefore dealing with the thought of Stella being started on a drug which I know nothing about is difficult for me to cope with.

Unfortunately there isn’t a huge long list of options when it comes to Crohn’s medications; especially when the most common ones Stella cannot have. Azothiaprine and Mecaptapurin are the most common drugs used, and are effective, however, Stella was intolerant to these at the beginning of her Crohn’s journey and developed pancreatitis whilst on taking one, and severe vomiting on the other, therefore ruling out these drugs, unfortunately. 

Humira is a stronger drug than Methotrexate, and appears effective at controlling flare-ups, however, is it worth the risk? I’m unconvinced. It’s very hard. I sometimes wish the internet wasn’t invented and the times of listening to the doctor, without questioning anything, was still the norm. Living blissfully unaware, and assuming things will just work out fine, doesn’t seem to be in my mindset, which is a total pain, quite frankly. 

There is a drug called Stelara which seems okay, and effective, however very expensive and not to be given until the patient is 18 years old. My plan is to inquire about this drug for when Stella is 18. Until then, I just hope and pray that Methotrexate can be kept going, tolerated by Stella, and effective at keeping things under control.

 Following my 3 to 4 hour google immersion, I had a chat with Stella about my thoughts re it all; I explained my concerns and asked what she felt about trying to stick to Methotrexate for another 5 years (what a thought). Stella, as stoic as ever, simply said, “Yea, that sounds fine.” And then I cried. 

I have no idea what the result of the latest calprotectin will be. I’m actually thinking it might not be very good, it’s a home kit we’ve got and something came up indicating that there may have been inflammation present. However, we don’t actually know this, and could be worrying over nothing. The results don’t come to us, they go to the hospital, and they then contact us. I’ve decided that I cannot continue feeling like if I’m not in control of this for Stella, then it’s a disaster. I know I need to accept that this disease is entirely unpredictable, despite feeding Stella what we think are the best foods for her. Stella is a happy, energetic, hilarious, and very sweet teenager who has lots of friends and is doing well at school; she takes part in tons of clubs outside of school, definitely not letting this stop her in any way.

Having had Crohn’s now for 5 years, she won’t really know anything different, as opposed to me comparing my life to hers, which is unhelpful. As parents, we all just want our kids to live happy lives. But it’s also up to us to teach them about resilience, and that life is not perfect.  We laugh a lot as a family, and couldn’t be closer (sometimes too much for Mum, actually, haha) but I wouldn’t have it any other way. This is what we’ve been dealt, and my gosh we know it could be so, so much worse. We will just deal with whatever comes our way with this disease, which I guess is the most important lesson to hand down. 

Thanks very much for reading. Take care.