So long, Methotrexate (please God, be forever).

Currently, as from err, yesterday, we are officially managing Stella’s Crohn’s DRUG FREE! I’m aware there’s a half- life situation so clearly Methotrexate will be present still in her body but I’m not sure when until. Anyway, the point is, we were given the Okay to stop it. Stella, normally, Miss flippin’ cool and collected, cried tears of joy. I did too which probably isn’t all that surprising. She chucked ‘em in the bin; I deleted all my alarm reminders on my phone, as well as the calendar (maybe a bit paranoid that she’d forget to take?) That was that. Eek, no more drugs.

To recap: we had been waiting for Stella to have an endoscopy and colonoscopy to assess things microscopically; the fecal calprotectin tests had been great but the hospital team just wanted to fully check up on things before stopping the drugs, which was fair enough. We were waiting for a date to allow all this to be done.

Date came through and off we went, me feeling somewhat nervous at the anticipation of what was to come. If you remember a previous post, I described the last lot of scopes experience as pretty horrendous. Watching your child go through the torture of a pre scopes bowel preparation is not easy. However, this time, piece of cake! Stella was oddly giddy going in to hospital; she had, as kids do, managed to block out a lot from the last time. Also, likely, the prospect of a couple of days off school, as well as a night with Mum; watching hours of Friends downloaded on a tablet, seemed v appealing!

I was mentally prepared for a repeat of the last time, but, to my amazement, the torture didn’t come. It literally did feel like a nice night away with my girl. Although we were hungry — there was still the fasting. 

The next morning, I spoke to the consultant regarding how easy the night was and even questioned the effectiveness of the bowel prep medicine, assuming that it hadn’t worked! She explained that because of Stella’s low inflammation this time, compared to the last time, that would have made all the difference.

We received the biopsy results of the scopes about 3 or so weeks later; advised that these were good. I figured at this stage we would be given the all clear to stop the drugs, however, I had forgotten about the small bowel investigation side of things. Due to the nature of the scopes, as far as I’m aware, the small bowel cannot be seen in either endoscopy or colonoscopy and so MRI is required to visualize the small bowel. We were told therefore that we would have to wait for MRI before deciding whether drugs can be stopped. 

Patiently, we waited. Meanwhile, Stella was still taking the drug and hating it. We had the routine of taking them down to a fine art: my niece would often be called round to give her moral support (fortunately for us she lives next door); a sick bowl would be required to hold, which, despite only being required one time, every time there would be the feeling that she would vomit. Talking Stella through having to take each tablet was not unlike supporting a woman through labour: lots of tears, forceful but gentle encouraging and hand holding; in amongst the panic and dread, every Friday night. Some nights were slightly easier than others but I’d say the last 6 months of taking it was really taking its toll on her. I am aware of how hugely melodramatic this sounds and I really want to stress that this wasn’t actually Stella: it was apparently the Methotrexate effect. It really is that brutal a drug. Admittedly, I struggled to understand why it was such a big deal for her; Stella being an easy wee individual, why on earth was taking 4 tablets once a week so difficult? I did some research and turns out Methotrexate really is hard to take for so many people. An adult I know could only stomach it for a year. This was year 3 for her.  

More weeks carried on of taking the drugs, and of course, so did Coronavirus fear. Methotrexate being an immunosuppressive drug, I was a bit worried, wondering if those on the drug would be at a higher risk of this virus having more of an impact on their immune systems?

I emailed the hospital team to ask if I should be concerned re this and also to plead if there was a possibility of stopping the drugs before the MRI and using the MRI as an indicator as to how things were doing off drugs. I reckoned that given the current situation re Coronavirus, a routine MRI for Stella would not be happening anytime soon, short of me attempting to perform it myself. 

The wonderful nurses listened to my concerns, reassured me entirely that Stella was not at an increased risk re Coronavirus and said they would discuss my suggestion of stopping the drugs pre MRI at the next meeting. 

The email came through the other day saying that the Methotrexate could stop. 

We’re obviously delighted. This is where we wanted to be. We want to see if our “weird” little diet for her will be enough to keep things under control. I am an anxious wreck though (although hiding this v well from her). Clearly it’s massive and will be soul-destroying to say the least if it doesn’t work. I doubt though Methotrexate could be an option again. I think she’s done with that. Stella has said that she would rather take Modulen every day for a year if it meant not taking Methotrexate again. We’ll just have to wait and see and stay positive and calm, ha!

 We attended a Crohn’s family research study day recently which was very interesting. The researchers there stated that they hoped and were positive that in 10 years time, all Crohn’s cases will be managed exclusively through diet. This was music to our ears. We, however, would love it for Stella, and whoever else, to be now.  

Thank you so much for reading.