I think this is brilliant news?…

Nearly 6 months of no drugs, yay. We have a very well Stella, a very happy (albeit sl. nervous at starting high school) Stella. And…a Stella who has gained 1.4 kg in about 2 and a half months! So despite there not being a Calprotectin test, I’m kind of jumping for joy.

I woke up the other morning in a panic that it had now been almost 6 months since stopping medication, and still we haven’t seen anyone from the Crohn’s team. Not that I’m in any way feeling neglected. I know there’s still the Covid threat, therefore the less hospital visits the better. I know that if I had any concerns, they would be on it. I think they trust me from past experience that I’m not someone who would hide my worries, far from it. 

So poor Stella, enjoying her Saturday morning (gf) Coco pops, and watching YouTube videos (standard), when I interrupted, armed with scales asking if she could stand on them. Did I let her finish eating? No. My heartbeat racing (small reminder to you of just how crazy neurotic I am) and there it was, a clear 39.4 kg, last we checked I think in May was 38 kg. It’s amazing how worked up I can get. I would have been surprised, gutted, so very worried had there been a minimal gain/loss. Plus it would’ve potentially ruined our camping weekend that we were going on in a matter of hours (I pick my moments to choose to measure these things, don’t I?) Stella, still having not finished her mouthful, nor taken her eyes off the telly, went back to mind-numbing YouTube, and probably won’t remember standing on any scales. I did a “Aw, yeaass!”, and woke up my husband.

I’m sure people reading this might not get the celebration. Understandable. It’s just that if there is a flare going on, weight gain is unlikely. At least I think this is the case. We’ve had the disappointing clinic visit (s) when weight gain wasn’t great. I remember thinking then that this would be an easy fix: I would simply feed her more, surely. However, not the case. It wasn’t until she started this diet that suited her, as well as the drugs, that weight gain wasn’t an issue any more. I’ve googled (obviously) what the average weight gain is for her age and apparently 2-3 kg a year is normal prepuberty, so I’m pretty pleased with her lockdown weight gain — mine though, not to be celebrated.

I’ve no idea when Stella is going to be seen by the Crohn’s team, I’m in no hurry though, no offence to them. I feel like we’re in a bubble. Happily managing this by ourselves, which seems crazy, I’m not usually this unorthodox. She has had routine bloods taken, this was in June, and will have them again in September. There’s no Crohn’s consultation though as such, a lovely general nurse takes the blood, easy peasy, and we leave! I assume the results were all fine this time because I didn’t hear anything. Again, we’ve had the phone calls informing us that the results of the routine bloods were not good.

We’re still awaiting word for the MRI. Again though, I’m in no hurry for this. The MRI is to assess the small bowel because neither the colonoscopy nor the endoscopy visualize the small bowel. I’m going with the ‘ignorance is bliss’ mindset just now, hoping that, as I’ve said before, the longer Stella is off drugs with no symptoms, the more confident we will be. Touch wood, there have been no concerning symptoms: no hip pain, no loose stool, no feelings of fatigue- far from it, no pale cheeks, no mouth ulcers. We’ve had a weight gain and a height gain; and an energetic toots that has spent the summer outside hillwalking, paddleboarding, cycling and staying up really late — or at least late enough to warrant feeling knackered the next day, but doesn’t.

Of course this may change. I know this. I do remind Stella that she still has Crohn’s, it’s just under control just now — we think. Nothing has changed dietary wise: gluten free, dairy free, aiming for lowest processed food possible, lots of fibre with the ‘rainbow eating’; as well as daily probiotics and sauerkraut every day, and bone broth as much as possible — which I think is just so underrated. 

School starts next week. Stella starts high school which is fairly flipping huge. She’ll be on the bus, which happens to stop/leave from the local shop. Of course there will be sweets. I just hope not hideous amounts. She’ll have to take a pack lunch because apparently the school gluten free range is not great/doesn’t exist. Suits me (control freak that I am). I’d love so much for her to continue thriving and feeling as though she doesn’t have Crohn’s any more. She knows that this is due to her efforts though with eating the right food. I’m glad she hated the drugs so much. If she didn’t mind taking them I wonder if she’d be tempted to sneakily eat whatever, and risk going back to inflammation, and then medication. Who knows? I doubt it though. It seems all so normal now. 

I hope all you other “Crohnies” which I’ve seen written on Instagram sites, are well. I hope this gives you hope that maybe it’s possible to manage Crohn’s without drugs, if not forever, at least for some of the time. 

Thank you for reading.