Hello!

Has, again, been a long time since I wrote about our wee Stella. Who, incidentally, isn’t at all “wee” anymore. She’s 16 and just a lovely, healthy girl. 

I actually haven’t written anything in over a year, which I feel a bit guilty about because I know that other Crohns’ parents have felt reassurance from this little blog.

The reason I haven’t written much is because things are fine – with Stella’s Crohns, that is; other aspects of my life, hmm, maybe not quite so, but for the purpose of this, all is pretty good. 

Stella’s latest calprotectin is less than 30. The calprotectin prior to this one was also less than 30. 

There has been a definite shift of responsibility recently, likely due to Stella turning 16, and naturally becoming more independent. Hospital appointments are now not a case of me taking over the chat, whilst Stella sits in silence. Quite the opposite now, and it’s wonderful to see.

The biggest issue with Stella’s Crohns recently has been her skin.

Adalimumab, which is the biologic that Stella’s been on now for 5 years, is brilliant for keeping her Crohn’s stable, but it is not without its side effects. Skin issues are number 1 on the list, and that is certainly the case for Stella. 

There has always been a slight issue with Stella’s skin since starting it. Mostly localised to behind her left ear (randomly). It causes an eczema/psoriasis type of rash. However, at the beginning of this year, and coinciding with exams, Stella’s skin became fairly unbearable for her. The worst being around her beautiful wee face. Such a shame when, at 16, things are hard enough. That said, Stella, being the trouper/strongest, most level headed person ever, took it in her stride. I’m in awe of this girl, actually. 

Don’t get me wrong, she will wind me up to the brink of insanity, a lot of the time. But, she is literally amazing to me, with how she handles life’s challenges. Clearly, that isn’t something inherited from me!

We/She didn’t want to rely on topical steroids to treat her skin issues. I, just to put it in here, have been struggling with topical steroid withdrawal now for 18 months. Thanks to a hellish few years of eczema treated with a very potent steroid regularly, for a long time. We hate them, actually, in this house. Which makes watching your daughter suffer with eczema, particularly difficult. Stella herself, having witnessed my horrific symptoms which are still ongoing, is determined to avoid over use of steroids, but she did use them for 10 days in the summer, which was absolutely the right thing to do. Especially because a plan of action had been made in terms of moving forward with the Adalimumab.

 My biggest worry was that Stella would continue to need topical steroids to manage her skin, for who knows how long, and as a result, could potentially end up with topical steroid withdrawal, as well as Crohns. What a horrendous thought.

So despite my moaning, I can’t stress how much I’m delighted to have topical steroid withdrawal, if it meant, my wee Stella, not having it. (But I am still allowed to moan, a bit).

The Adalimumab plan is that the dosage is being reduced. So many prayers please that 1. It continues to work well for her Crohns and 2. Makes her skin super soft and eczema free, please. 

Stella’s prayer, if asked, is that she can have her belly button pierced without any issues. This is currently priority no.1. (oh to be 16). Given how extreme her skin has been, I’ve been somewhat reluctant to support this…but we’ll see. 

Diet wise, things are just the same really: gluten free, dairy(mostly) free, apart from butter. She avoids lots of spices, eats lots of veg and I still make her eat sauerkraut.  

We’re very lucky in that I can cook from scratch and meal plan accordingly, avoiding ultra processed guffy foods, as much as we can. 

Stella’s asked for an air fryer for Christmas. She likes to experiment, her latest is “scrambled pancakes”. Odd, but actually quite yummy. But you probably won’t see her on Bake Off any time soon. 

It’s a challenge and a half trying to find a non toxic air fryer. I’m still clearly neurotic btw.

We did find one that’s quite cool called the Wonder Oven, if anyone’s interested. 

So that’s us. I forgot to say that Stella nailed her exams this year. Despite whooping cough during them, and unbearable skin, she did it. She wants to be an interior designer which I can totally see her doing. An interior designer with a belly button ring. And lush skin. 

Love to all you Crohns people. I really hope that you’re all doing okay and that Stella’s story continues to inspire…

xxx

Hello, hello!

Hope you’re all well and enjoying this “summer”. Such a shame for the kids off school. I don’t remember any July being so wet! 

We didn’t go abroad this year, we went to Center Parcs, which was amazing. Loads of fun things to do. We were with friends, which made it even better.

Anyway, much more to the point, our Stella Bella is well! I reckon so, anyway. Still taking Adalimumab injections once a fortnight. The last calprotectin was 100, this was in February. No current symptoms at all, so we’re hoping that things are lovely and settled inside that lovely tum. 

Stella is nearly 15. What on earth?? Honestly. Cliché, but I really can’t believe it. 

She is a lovely, happy, confident, slightly bonkers teenager who is gaining independence and maturity (ish) – and it’s just so amazing to watch. 

One of my worries was that Stella having Crohn’s would somehow impact her social life as well as normal activities at some point, but it just hasn’t. She is hanging out with her friends, trips to town, lunches – expensive, for me, but I’m not discouraging. I’m happy to eat beans on toast at home while she’s eating at Wagamama, thanks.

Incidentally, Wagamama & Bread Meets Bread are her gluten-free go-to’s. Both excellent for allergies/intolerances. 

We’re going on holiday very soon again, this time in a caravan. I ought to be packing, but I had this feeling that those who follow us for reassurance might be wondering what’s happening with Stella. Haven’t posted for ages, and that’s only because she’s doing well! Nothing really to report. Hence, the title! Believe me, if something was up, I would be tapping away on my laptop with all my worries!

I really do hope you are all doing well, and your little people with Crohn’s are doing well, too. 

I guess the only thing is that Stella is slightly anaemic. I’m not concerned, though. I suspect it’s to do with being a female, etc. She takes an iron tablet daily (when remembered) and that’s it. It was actually a cause for celebration when she did take her first iron tablet. Given that at nearly 15 she still would take Calpol over paracetamol, I didn’t think she would ever manage to swallow pills again. Methotrexate trauma being fully to blame for this! But she did it, with no problem. I mean, they are tiny tablets, coated in probably sugar, but that’s fine! A hurdle overcome.

To brag for a minute/ further reassure that Crohn’s isn’t impacting much here. Stella is loving her athletics. She trains as well as participates in competitions, having won a 100 m race just recently. She looks the part. I stand like a huge weirdo at the sidelines just so full of pride at this healthy looking fit girl pounding down the track. I’m forbidden (by Stella) to cheer. Apparently it’s off-putting. Ha! (So I mutter, instead.)

So things are great for her. Obviously all normal life ups n downs, but overall really good. 

As for me, seeing as you’ve asked, haha. I’m going through my very slightly hellish perimenopause journey, which is far from fun. Lovely symptoms of what I can only describe as electricity running through my body, at times, causes body jolts. Horrible and unnerving. However, I’m on track of getting sorted soon, hopefully. I just thought I’d add this just in case anyone who reads this is experiencing something similar? We could be peri men pals.

And that’s it for this little post, I really must pack. I do receive quite a few comments from around the world, thanking us for the updates and reassurance, so I wanted to send a very quick message to them. To reassure you, all is well, and I will continue to keep in touch with any changes along the way. 

Thank you, sending love, and well wishes to all. 

Happy new year, guys! 

I hope you’ve all had a really nice time, and to all the fellow IBD’ers, I hope you’ve kept well!

We’ve had a brilliant time over Christmas, really busy, really fun and everyone has been happy – apart from my poor flu ridden Mum. Stella, however, the main man, has been really well. 

I’m a member of many a Crohn’s forum/ group on The Socials and I can see how utterly awful having Crohn’s can be for some people, particularly around this time of year. As joyful as Christmas is, it surely has the potential of wreaking havoc on all of our bodies: stress, late nights, excessive food, booze (although thankfully not yet in Stella’s case), is bound to have some sort of detrimental effect. I have eczema and I’m currently feeling pretty wrecked with it, thanks to the over indulgence. Dry, ish Jan is my plan; the “ish” being because I have a dear friend’s hen night right bang in the middle of it (shame).

Anyways, the main reason I’m writing this is to report on the latest calprotectin result. 

Well…it’s 300. I have soooo much to say about it, so brace yourselves, ha!

Overall, we’re pleased. Stella is great; as I said, she hasn’t really any symptoms. She is thriving and is as happy as Larry on Adalimumab as her only medication. I feel so grateful when I see Stella laughing, playing, just doing all the things everyone else is doing. There have been a couple of moments of some tummy symptoms over Christmas; I instantly panic (doesn’t sound like me, eh?) that she’s going to be quite ill, but she absolutely isn’t, she just carries on with whatever she is doing, which is usually something really random like building a Go Kart.  

To recap… Stella’s calprotectin was taken at the end of August. This came back at 500. She hadn’t long started back at school and was slightly symptomatic. I do think nerves going back to school after a long summer of fun definitely plays a role in this. FYI she had zero symptoms previously this whole year!

We didn’t find out the result of this calprotectin until we had a meeting with the IBD team 6 weeks or so later. I assumed that it must have been fine because I hadn’t heard. Stella wasn’t worsening, and in many ways I sort of didn’t want to know. 

As always, our wonderful nurse was very reassuring and suggested we hand in another calprotectin 6 weeks later.

So this was in October, I had knowledge that Stella’s calprotectin was 500, and we were to hand another sample in mid November.  I suspected it may have climbed even higher than this at this point because we hadn’t known what it was and therefore hadn’t applied anything new to try to bring it down. I decided therefore, I would look into what we could do, as a family, to try to naturally reduce this. None of us, obviously, especially Stella, would want the calprotectin to climb up the way, resulting in likely a change of meds/ possibly Modulen/ steroids etc. 

I did some research and decided what might work would be a diet much more bland than what had been our norm; and low residue. This was harder to do than it sounds. Admittedly, I had definitely been getting somewhat carried away with cooking. Thanks to Pinterest I have been experimenting with stunning new recipes – uploading them onto my instagram page, and feeling ever so pleased with myself. However, in hindsight, and doing the research, I’m wondering if it’s all been a bit too spicy for my lovely Crohn’s daughter’s tummy.

 When I first started looking into how diet could help Stella with Crohn’s, the more traditional meal featured heavily: slow cooked meats, potatoes, casseroles, etc. Nowadays, and in the past year or so, I’ve been cooking more vegan meals, including beans, spices – definitely more colourful, but, I question it now – are these foods just a bit much for the IBD people, if consumed most days? It’s very hard to know. I’m, as usual, just going with my gut (pardon pun, have I done this before?) and hoping that Stella will continue to thrive with what I’m feeding her, as well as the medication. All the while the diet remains, as it has always been, gluten, dairy free, unprocessed, with fermented foods thrown in. Anyway, back to my experimental low residue diet…

Fibre is a funny one. I reckon, and I could be way off, but I think that when someone with IBD is not in a flare, and has no issues with strictures etc, they could benefit from a diet high in fibre. This should help the microbiome, which is crucial in overall health. However, with someone experiencing a flare up, seemingly fibre is not your friend. With that in mind, I had to, fairly dramatically, change Stella’s diet, for the short term, to see if this would bring down the calprotectin to a level which would not require altering the medication. I knew a low fibre diet should never be long term, however, for 6 weeks, I figured that the potential benefits would outweigh the risks. I also realised that I would probably benefit from not looking at fancy recipes on Pinterest, but revisit old recipes from my lovely late mother in law’s collection.

Stella was up for it. As I’ve said lots of times before, she adapts amazingly well to pretty much everything. And now that she’s 14, she is understanding lots more about her Crohns. So we worked together and chatted through a suitable meal plan. This involved a lot of bone broth making, which is something I hadn’t necessarily stopped, but probably didn’t do enough of this past year. Chicken, fish, rice, potatoes, well cooked, peeled vegetables, avoiding raw veg and high fibre veg. Green beans, asparagus, lettuce leaves, melon, bananas, peeled pears were the fruits n veg on the menu. Rice krispies or corn flakes (gf) with white gf toast was breakfast. We avoided red meat too as it can be difficult to digest when your body is in flare, apparently. A daily vitamin was continued as I was worrying re iron levels, etc.

 Stella took to this new diet superbly, and even claimed that her tummy was feeling a bit better. We were still, however, looking forward to handing in the calprotectin, and celebrating with a delicious gf sausage roll with baked beans (!!)

Unfortunately, and very typically, the week we were to hand it in, we all developed flu! Thankfully, Stella wasn’t terribly bad with it, but it did mean that we had to wait for a few weeks/a month before we handed in the calprotectin. This is because the flu virus apparantly have the potential of raising a calprotectin. We were really disappointed and, feeling frazzled with flu, felt exhausted at the thought of carrying on calculating fibre, etc.

Three weeks past, Stella felt fine; flu wise, no lingering symptoms. I was ready for her to hand in a sample for the calprotectin, but thought to wait another week, just to be sure. During this week, my other daughter developed symptoms of a stomach bug! A stomach bug can almost definitely increase calprotectin, so I was err, panicking. However, no one else was, as usual, and Stella, calmly, was able to provide the sample to allow me to hand in. Incidentally, this was a Friday and I was very rushed for time before the lab shut, but that’s neither here nor here – just added to the existing neurosis!

 It was handed in. Nothing more we could do, like an exam. That evening we had a feast of fibre (not really) – and Stella tucked into gf sausage rolls and baked beans – simple pleasures. 

Fast forward… 2 days before Christmas, and the result was emailed to me. I initially was a bit flat on reading it, however, realised that actually, this was a good result. I think in October it had probably climbed to 600 or thereabouts (knowing the symptoms) therefore, it had been halved by diet alone, in 6 weeks. Also, she had flu 3 weeks before so who knows if this 300 could be partly due to flu? We’ll not know. 

The IBD team wishes for it to be repeated in a few months. I think the plan of diet is going back to what we did a few years ago, before I got carried away. I’ll still provide the odd vegan meal, possibly a couple of times a week, but I will steer clear of adding lots of spices to it. And, most importantly, continue ensuring Stella doesn’t get too stressed and is a happy girl, which currently, she very much is. As it happens, she’s been sitting beside me half reading this/ half watching Bad Boys 2 – her current career of choice now being part of the SWAT team. Excellent. What every anxious mother wants to hear. 

Thank you for reading!

Love n hugs to you all.     

Hi!

Has been a long time since I’ve been here…hope you are all well! 

Things have overall been great, Crohn’s wise – I think? 

Stella is 14 now which I can’t really believe. It has been 5 years of Crohn’s, and she is still handling it like an Absolute Boss. I’m currently laughing to myself about how many times during these 5 years I would have asked Stella the question – with trepidation, and completely faked calmness: “How are your poos, pet?”… At least once a day for 5 years is an awful lot.

Currently, we are in a state of limbo, hence the late night blogging, and hence the title. As you know I love/ need to write down thoughts when feeling anxious, and right now I am a bit anxious. My darling Crohn’s teenager, for your reassurance, is not anxious at all.

 Stella has grown into a young adult who, amazingly, is very laid back. Admittedly this infuriates me a lot of the time; nagging her/ reminding her to do the basics: teeth brushing (true story) is my full time job. However, she’s my lovely laid back teenager, and I adore her, and I’m genuinely delighted that she isn’t terribly anxious.

A year ago, around this time, Stella’s medication changed from Methotrexate to Adalimumab. This was partly due to a mild flare up, which begged the question of whether methotrexate was becoming ineffective. I do think this was a “meant to be” flare up, which sounds nuts, but I, as Mum, needed a push towards changing the medication.

Methotrexate was still utterly awful for Stella, you’ll maybe remember previous posts talking about the side effects, vomiting being the most obvious one. It was awful for her, but yet she carried on, like the trooper she is. I was reluctant and frightened of Adalimumab, thanks to Google.

 I’ve since stopped going down the “rabbit hole” of information out there. Having some knowledge, yes, but hours spent reading other peoples’ stories, without knowing background information, is unhelpful, and damaging to mental health! During this time Stella was willing to carry on Methotrexate, despite the horrendous vomiting before and after the drug. A high ish Calprotectin result of 400 forced the switch of drugs, which did need to happen. This Calprotectin result wasn’t terribly high for Stella, but warranted a change in treatment nonetheless. Adalimumab thus became the new drug.

What a difference! What was a Friday night of misery, for everyone, is now a fortnightly on a Friday, 5 minutes, of Dad giving her the injection, while I sing, or dance or do anything to distract, all the while reminding her to wiggle her toes. It’s a sore injection, sorer than Methotrexate. Wiggling her toes whilst receiving it is apparently a must. And that’s it: no vomiting whatsoever, not even nausea. It’s so easy now that I’m scared we forget to give it; I have a Post It note which I take out to put on the kitchen work top on a Thursday; reminded by the reminder that pops up on Google Calendar. Our phones are also set to alarm. Still neurotic? Absolutely, but we haven’t forgotten yet! 

Adalimumab isn’t without any side effects, of course. Since starting, Stella’s skin has been a bit problematic with an eczema type reaction. It’s not a huge problem, however, if she doesn’t apply her creams daily, and bathes with emollients, her skin can break out. An antibiotic orally was required earlier this year because of it, which re gut health is something that I’d prefer her to avoid, but clearly it was needed. So you can imagine this daily cream applying requires a lot of nagging/ reminding…

Despite this, Stella is happy. She’s her own person, is independent (not really); loves days out with friends, loves to paddle board; loves to still play outside – which I love to see. She’s very outdoorsy; she goes to athletics, runs very fast, and she still goes to aerial yoga, which is so good. Most importantly though, is that she has an excellent sense of humour. I think having a chronic health condition, without a decent sense of humour, would be hard. She laughs at me a lot, particularly when I’m tiptoeing behind her with emollient creams to just slap on at any opportunity; she mocks me, which I love, and so I remind her frequently that there will be payback, if and when she’s ever a Mum herself.

We have a bond of which I am so proud. It’s different now, parenting the 14 year old with Crohn’s is far harder than parenting the 8 year old. I controlled what she ate back then, no question. Now…it’s a lot up to her. I still cook everything from scratch; I still make her a pack lunch; it’s all still gluten free, dairy free, nut free, organic (if poss), minimal processed, probiotic, prebiotic (!) The difference now is that she’s out, socialising, which is brilliant, but I don’t know what she’s eating during these times, and that needs to be OK.

Back to the limbo…right now I think she might be flaring, despite still being on Adalimumab. As ever though, Stella appears very well; she’s growing, she’s putting weight on; she’s red in the cheeks; she’s still going to school everyday, and doing all the extra curricular stuff; but she’s having some mild symptoms which, knowing Stella, can be a sign of a high Calprotectin. Coincidentally, these little flares tend to happen at this time of year. I wonder if it’s post summer hols/ back to school anxiety that can cause this for her. Stress is huge for Crohn’s. And, despite me banging on about how laid back she is, going back to school after 7 weeks of pure fun, is enough to make the most laid back kids a bit nervous.

 So, we’re in limbo because a Calprotectin has been sent off, with no results yet. I’m not biting my nails as such, I’m just a bit anxious and sort of thinking that I hope things don’t need to change much with her medication. Diet wise, I’m purposely trying to feed her just now a slightly different diet during this “flare up.” This is not recommended by the hospital team at all, again this is just me, trying to do what I think might be sensible. I read about following a more bland diet when your body is in flare; so not to further aggravate, this involves things like chicken, fish, rice, mashed potatoes, bone broth soups, peeled, cooked vegetables, etc. This, when you’re used to cooking lots of variety, is hard. Of course, Stella is loving this. Her favourite food is literally rice so this is great as far as she’s concerned. I’m just hoping that things will settle and the result of Calprotectin will be OK. But until then, there’s not much we can do other than wait and see.

Tonight, when I went to say goodnight, I was met with a very loud noise, which made me jump out of my skin – and Stella in hysterics. This was the result of the “fart machine” that friends of mine bought her as a recent birthday present. So thanks for that, you know who you are. But it’s ever so nice hearing hysterical laughter from your teenager when they go to bed, reminding me, again, that she is handling this beautifully. 

Thank you for reading! Prayers all round please for continued stability here, and to all of you! Hugs, hugs, hugs.  

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. 

Hi, lovely readers. You’ll be pleased to know that this blog post is about Stella. Not about me, Anxious Annie/ Mad Mary.

Stella’s Calprotectin is 60! So pleased. Kind of can’t believe how quickly it has dropped from 1000 to 60. However, not really understanding how they work, maybe this is normal? Anyway…what this means is that Modulen works well for Stella. There’s much more talk now about gut dysbiosis; we were told at the last clinic appointment that her latest flare was to do with the bad bacteria guys taking over the good bacteria guys. When you read about Modulen, and it’s benefits, there’s not much literature around how it actually works. I believe it contains anti-inflammatory properties and allows the gut to rest, in a sense, because there is no food to digest, only liquid? What baffles us though, is the amount of sugar one consumes on Modulen. Modulen itself is high in sugar, not forgetting the chocolate syrup that goes with it; the 7UP (although Stella doesn’t particularly have much of) and the Foxes Mints (err, loads). So I am confused, given that sugar encourages the bad bacteria guys, does it not? So of course we’re delighted, but we remain confused, a bit.

I should ask more at hospital appointments when we’re there; I guess I’m so distracted by what’s happening there and then that I don’t feel I can. I need to stop being so British and just ask more. Maybe next time…

What does a Calpro of 60 mean, exactly?

It means no need for steroids. Which is what I was worrying about. It means that the Methotrexate injections are doing their job, and that they’ve to stay. We’re now calling it Metjet, which is the name of the injection. The word Methotrexate isn’t welcome here. This sounds slightly ludicrous, I know, but, and I keep saying this, Stella (unlike me) is so laid back, reasonable, logical. She’s traumatized by the Methotrexate tablets, and so we’re trying really hard to separate the two. The injections were going well, up until recently, sadly. She is not finding it easy. It’s once a week, again on a Friday, in case side effects affect her schooling. My phone alarm goes off at 1900, and it’s time. She was physically sick on Friday prior, and it is prior, which means that it’s psychological. It’s heartbreaking for me to watch and on Friday there I removed myself and allowed Mr Calm (husband) to take over. Knowing that my being on tenterhooks was certainly not going to help anyone, I took myself to my room. Clearly, I’m also somewhat traumatized by the Methotrexate tablets. My husband, in the end, gave her the injection. She then came upstairs and laughed, quite insanely sounding actually, at the fact that “Daddy wore the yellow marigolds to give me my injection.” I didn’t care. I was delighted that she was laughing.

In terms of feeling nauseated the next day, I think there’s less of that on the injections, as opposed to the tablets, which is brilliant. So who knows, maybe it’ll get easier for her, I truly hope so. But as my sane friend reminded me, Stella takes everything else in her stride, maybe I ought to allow her to find this hard; to almost just accept that this is going to be difficult for a short while on a Friday night. Makes sense. I just find it so difficult to watch. Perhaps we could both do with hypnotherapy/ counselling/ knocks on the head…

Food wise: can’t wait for January. Since Modulen has finished, it’s been a diet of gluten free and dairy/lactose free foods; but also: After Eights, Lucky Charms and Sugar Mice. Clearly it’s fine because it’s short term, but I’m looking forward to bread/ snack making again, searching new recipes, and aiming to feed her, and the rest of us with actual food — that doesn’t contain 15 unpronounceable words! And fermenting again! Sauerkraut with turkey didn’t happen. 

We’ve started Stella on new probiotics. These are called Livespo Colon. Each one comes in a little vial which she drinks after a meal once a day. So far, so good. This was started after the Calprotectin was taken, so I doubt this was the magic cure. 

Stella is, by the way, still perplexed by all of this. She insists that she feels no difference with a Calprotectin of 60 than when it was 1000. I notice that her cheeks are rosier. That’s about it! 

We know though, that had she been left, without intervention, typical Crohn’s symptoms would likely develop, and we don’t want that. We started watching the documentary “Strictly Amy: Crohn’s and Me.” We switched it off after two minutes: it was not a nice watch, although brilliant that Amy hasn’t let Crohn’s stop her in any way. Thankfully, Stella said something along the lines of “well that’s not anything like my Crohn’s.” Which is great, and hopefully will always remain that way. 

Thank you for reading. Here’s to a far happier and healthier 2021 for all!

How are you lovely lot doing? I hope better than me!

I’m feeling very compelled to write just now, not necessarily about Stella’s Crohn’s this time, so for fellow Crohnies, or people reading this hoping to hear about Stella, here is your warning!

This blog post is mostly about my journey with health anxiety, with a bit about Stella. Health anxiety is not helped with having a child with a chronic condition, but I’m in no way blaming Stella for this! I was just as anxious prior to the diagnosis. Given my title to this entire blog, I assume you get the gist that I’m fairly neurotic. And with neurosis, comes anxiety (or with anxiety, comes neurosis?).

Anyway, I’m currently struggling, and I know that I’m not alone. I’m incredibly lucky because I can share my thoughts with friends and family, and whilst they may be sick and tired; worried and confused as to why I feel this way, I feel supported. I can’t frankly bear the thought of anyone out there struggling silently, while thinking they’re going mad, and not have anyone with whom they feel they can confide. Maybe that’s why I’m writing this? My anxiety this week has reached fever pitch and so please, anyone who suffers similarly, you’re NOT ALONE. 

Is it the pandemic? Perhaps, that and a few other things that have probably set off some sort of trigger in my primal part of the brain (thanks, dear friend who explained this!).

Stella is off Modulen and back to eating and, whilst this is great for her, I’m a bit cautious with what to feed her, although as usual hiding this from her. A Calprotectin test has been carried out which tells us the current state of inflammation. I’ve no idea when we will receive the results, until then I’m TRYING to not think about it too much. I genuinely am feeling a bit calmer with Stella’s Crohn’s, despite the flare. I feel confident that whatever happens I think she’ll be okay. She isn’t loving the weekly injections which I find hard, but she / we know that there is no choice: we just have to get on with it. She bounces back quickly though, which is both reassuring and inspiring.

We’re currently involved in a research trial called the Ipens trial. When I say ‘we’ it’s because it’s Stella who provides the samples, receives £20 per sample, thanks very much; while I record every single thing which goes past her lips. Not easy. I’ve to record the weight and the brand of everything into a food diary at the end of every day for 3 weeks. Perhaps I’m finding this more stressful than I think which isn’t helping the ol’ brain. It’s all for the greater good hopefully, as the aim is to see which foods can trigger a Crohn’s flare — therefore, hopefully, managing all Crohn’s disease via diet. The researchers have told me that in 10 years time, this is what they’d have liked to achieve. I’m, therefore, well up for helping this cause. 

I’m not, currently, losing sleep over COVID-19, as such — and all the upset it’s bringing. We haven’t lost jobs, we haven’t known anyone who has died. (It’s amazing what we’re basing our happiness on right now isn’t it?) However, I am in a constant state of alert, or “fight or flight”, fearing all sorts, continuously. This particularly hellish week I’ve managed to convince myself that I’ve had 4, no less, different forms of cancer. I see, or I feel something which I’ve perhaps not noticed before on my body and become entirely obsessed. I do the worst thing and I Google. This, according to my good friend, does nothing but feed my primal brain; like adding wood to a fire, it keeps it going. Your primal brain is responsible for protecting you, in moments of danger. Thinking back to caveman times, the primal brain is responsible for saving you / your family from big, scary bears, and such like. It’s not meant for everyday situations, but I, and I know of plenty others who do, tap into this far too often. And when you start, the cycle continues. I can be reassured one day, then the next day, find something else. It’s all very consuming and depressing.

 I’ve not suffered from depression before; of course I know it exists. I know a good few people who have suffered / suffer from the “black dog”, so I can certainly sympathize, but I haven’t experienced it myself to fully understand – although I can imagine it as horrendous.

My health anxiety is alien to some people, which I’m delighted about. I’m glad there are people who can live their life without this continual fear. My husband hasn’t suffered a day of anxiety in his life, this helps me. He is the Yin to my Yang and whilst he should find me just so irritating and annoying, he doesn’t (not about this anyway). He sees how desperate I am, how scared I am, and does everything he can to help me.

 I have faith. I believe there is a God, does this always help? No. A lot of the time it does, but not when I’m in my “zone”. It takes much talking to friends, asking all sorts of ludicrous questions like “have you got tiny white bumps on your hands too?” and other random, absurd quizzing. This was today’s, and obviously one of my far less embarrassing ones.

I (frantically) scroll through my phone, looking for old pictures of my hands (or whatever it is I’m worrying about that day), to compare; desperate for reassurance that these tiny white spots have maybe been there before – to provide me with ANY reassurance.

It’s awful. There is a part of me who knows fine well that this isn’t necessary. That I am not going to die because of white spots on my hands. But I am in The Zone. And I can’t get out of it.

Today it took my good friend’s cousin, an actual dermatologist, to tell me that my hands were fine and the white spots were due to my eczema. Instant reassurance, followed by intense feelings of embarrassment and shame, which is what I’m experiencing right now – and then wondering what tomorrow will bring.  

I have a friend who doesn’t suffer from anxiety. She’s great. She gives me a telling off (which I love/need), and essentially slaps me. I can get out of The Zone quickly when I speak to her. I’m forever grateful to her – as well all my friends.

I try to hide this from the girls. Although it’s difficult. I’m open about anxiety and mental health, to an extent. I think it’s vital that we talk about it, but there’s a balance to be found isn’t there? They don’t need to know what’s going on in my head. But I think it’s good to let them know the reason for my crabbiness (is this a word?). They describe me as going through a “Mad Mary” phase when I admit that I’m feeling anxious. I hope this phase doesn’t offend anyone. I like it. It makes us laugh, eases the tension and reassures me that they don’t think it’s to do with them, which is important.  

Anyway. I’m writing this unsure whether I will actually publish it! It’s very personal, and I hope I don’t regret baring my soul like this. I know though, as I’ve said before, I’m not alone in this and if there is anyone who has felt like this recently, please know I understand. I believe it will pass, and you will feel better again. Despite suffering from bouts of this type of anxiety since my children were born (thanks a lot, weans) I know I’ve bounced back, and you will too. And as my kind, sympathetic GP says, having some anxiety works for some people. I believe I was good at my job because of anxiety, maybe? And… I doubt we’d have had a Crohn’s diagnosis for Stella as early as we did had it not been for my anxious wee brain. For that I’m thankful. If only this overworked amygdala (!) would calm it for a while, at least over Christmas.

Thanks for reading. I really do hope it will help other anxious souls. And to my dear family and friends: I am forever indebted to you.

Love, 

Sl. mortified Mad Mary 

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.

Hi. It pains me to write this. And I write this with a glass of wine beside me, incidentally while the rest of the family laugh their heads off (including Stella) watching Teen Titans, or some guff. Anyway, get to the point, Mairi. 

We’ve been told today that, after 7 months, Stella needs back on medication. Gutted. 

Her Calprotectin (inflammatory marker) is up at 1000. 

I can’t actually get my head around this because she seems so WELL. It’s truly baffling and I keep thinking that maybe they’ve got it wrong, somehow. 

Since the last post, Stella has started high school- this has been brilliant so far. She’s happy, confident, chatty; still putting on weight, she’s rosy cheeked. Since starting back at school 5 weeks ago, there has been the odd, isolated, mild loose stool, only. No hip pain and no lethargy. I put it down to maybe nerves, viral? It did of course worry me but I didn’t think for a minute that her Calprotectin would be so high. 

What’s also gutting is that the sample was handed in 3 weeks ago. I adopted the ol’ “no news is good news” when I hadn’t heard the result. I know in the past when it was high I received the phone call after a week, maybe? I know though they’re so busy, I get it. I get that there are lots of very sick wee kids with Crohn’s and Colitis that they are dealing with. And also through a pandemic. 

What was also hilarious (not really) was when I phoned the GP yesterday to ask if maybe they knew the result. The very lovely receptionist told me it was 30! I naturally almost jumped for joy, phoned my husband; then had this sinking paranoia feeling that perhaps this was an old result. It was. She had informed me of last year’s result. She was apologetic and lovely and helpful, putting me through to the gastroenterology receptionist at the hospital. This was when I started to wonder…why did the receptionist want the consultant to phone me? Why couldn’t she just read it out? Policy? Or a not so good result? 

This morning I received an email from the Crohn’s nurses saying that they were very sorry but that the Calprotectin was higher than expected and Stella would require medication again. I doubt I need to explain the feelings. My biggest worry was telling Stella, and her immediate panic at the thought of having to take Methotrexate tablets again. I understand completely that she had reached the end of taking these. It had become a psychological issue: almost to the point of panic attack. You may think that a child of mine is of course going to have anxiety issues, but Stella does not. She has (thank The Lord) her Daddy’s far calmer and laid back personality. I emailed back explaining that I felt gutted and shocked at the result and desperately worried that Methotrexate tablets would be on the cards again. I did my best to plead for this not to be the case, at least so that I could reassure Stella. Thankfully, they responded promptly to my email, saying that no, they wouldn’t put her through that again, and agreed that perhaps Methotrexate injections would be a better option this time.

Of course, as I well know, Methotrexate is a maintenance drug. Therefore, Stella would require either Modulen, steroids or a new treatment called CD Treat, to initially, and rapidly, reduce the inflammation. This choice, I know, being 12 years old now, is up to Stella. 

My husband and I met for a coffee, while Stella and her sis were looked after by my sister-in-law after school. The purpose of this was for me to try to reach a 180 degree turnaround of my mindset before telling her. I couldn’t be, and didn’t want to be, the Crying Wreck Mother Figure. I know that if I’m fine, Stella’s fine, and vice versa. We chatted, I cried, and reached the conclusion that actually, it’s all fine. We achieved 7 months of a drug free, very relaxing summer, and still have a very well child. Yes, the result is high, but she is clinically well, and happy. We have a Calprotectin that is HALF of what it was 4 years ago when we started this journey, and back then we had an ill child, not one prancing around in fancy dress because she’s making a movie with her cousins. And, we know we could have it so much worse. 

We got home and sat Stella down. I explained the goings-on. Of course, she cried, but very quickly was okay. She’s beyond reasonable and stoic and just so loveable and awe-inspiring. As is my other wee treasure who was feeling all this too. 

I’m so proud of them both. I know Stella will be fine. I will pray specifically that her transition back to remission is a smooth one, with little bumps, please. 

We’re due a MRI next week and a Video call too with the consultant. I know they won’t hesitate to commence a plan as soon as possible. Meanwhile, I’m not stopping anything food wise: I must believe that what she’s been eating hasn’t been a waste of time. That perhaps if we didn’t omit gluten, dairy, that she would be worse. I’m going to carry on fermenting, giving her probiotics and providing her with as nutrient dense food as possible — that she loves!

I know the next few months aren’t going to be easy. But, we’ve had worse, and coped. And (arguably) stronger for it. I’ll keep in touch with how it’s going. I’m interested to know how other people have managed with the CD Treat, and also steroids, and Methotrexate injections. Positive stories welcome, please!

Thank you very much for reading and I’m sorry that it’s not great news. I feel positive though, that she’ll get back on track and her Calprotectin low again, with a bit of medication and a diet to suit. Maybe one day, she might not need medication, who knows, but until then, she’s got us: including one neurotic but fully committed Mum, who adores her, and that’s what counts, doesn’t it?

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.