I write this title super tentatively. I actually thought it was 3 months when I started writing this (I think that’s the lockdown effect). However, we’ll be 3 months soon and from what I can see with our girl, there doesn’t seem to be any signs telling us that she needs to go back to medication. Thank goodness.

Currently, as I sit here, wishing I was 11 years old again, Stella is outside playing on a self-made “Slip ‘n’ Slide” using the sides of an old gazebo (obviously), a hose, body boards and washing up liquid +++. What can possibly go wrong? Screams carnage, yes, however, she and her sister are, at present, happier than pigs in ****. 

 As I said in my last post, Stella’s appointment post coming off drugs was cancelled, due to the Coronavirus outbreak. So, actually, we don’t know what her Calprotectin is. What we do know, however, is that she is growing taller; she is putting on weight (we think, we, rubbish parents can’t remember exactly what her last weight was) but we doubt she’s ever been 38kgs. We’re not obsessing over her weight, she certainly doesn’t fit into her summer clothes from last year, so that’s a great sign. Her attempts to put on her age 11-12 wetsuit to “surf” down the slip n slide, are hilarious. She’s rosy cheeked, has boundless energy and zero loose stools, nor hip pain. And she’s got a tan, of sorts, freckles too! The first ever, thanks to not feeling the need to smother her in factor 50 as soon as there’s a hint of sunshine, which was what we felt we had to do on Methotrexate.

I reckon, despite not knowing what the Calprotectin is, that all is okay.

Truthfully, the thought of waiting for the results of said test, fills me with such anxiety that I’m kind of glad we don’t need to think about it just now. I don’t half get my knickers in a knot over waiting for results. I wonder if this stems from fairly dreadful higher results at school. 

So all in, things are good here, Crohn’s wise. Homeschooling wise, not as joyful. We do enough, but I’m very aware that stressing isn’t good for anyone, let alone someone with Crohn’s, or any gut related issues. Much more important to focus on well-being I say, during all this, and blinking play – playing outside especially. Being a bit filthy and not washing for a week (them, not me) all should, hopefully, help that little microbiome of hers become more diverse. I feel really fortunate for having a garden. I feel really sorry for those in lockdown who haven’t. 

My Instagram page (Usvcrohns) is, I think, going well. It’s nice to share photos of what we eat, as bizarre as that sounds. I’m enjoying nosying on other people’s pages who are following a similar diet to us, for their ideas. (Clearly, you all know how Instagram works.) The only thing that I can feel slightly anxious over is when I see other Crohn’s adults who follow an even stricter diet than us (gulp). They have perhaps gone full on Paleo which is similar ish to ours in that there’s no gluten or dairy, but the main difference is no grains. So not even rice, pasta, gluten free or not, bread etc. No thanks. I don’t think we could do it. I think it wouldn’t be enough calories for a wee 11-year-old surf ‘n’ slider for a start, but presumably fine for an adult should they need to. Nuts are a big protein intake in the Paleo diet, and we can’t have them here, therefore, fully justified that we are not going to try this way of eating any time soon. Also, and I must keep remembering this, everyone’s Crohn’s is so unique to them; ours was diagnosed at an early age, therefore almost “caught” and treatment started quickly. Unfortunately, I reckon so many people were diagnosed at a later stage and therefore possibly potentially more damage done? Is this why an even stricter diet is required? 

We’re not out of the woods. I know this. It’s been a long 2 (nearly 3!) months since stopping the drugs. I assume would’ve felt faster had we not been imprisoned in our home! But the longer time passes, and no symptoms show, the more confident we can be that possibly this can be diet led for Stella. We just have to keep going to see. 

Hi all, hope you are all well and coping in this strange time. 

I am filling my day with cooking and baking and generally doing anything to distract me from homeschooling and breaking up fights, hence also this.

It’s been a few weeks since Stella stopped Methotrexate. I would think by now that it is well and truly out of her system? If so then, so far, so good (she says, tentatively).

I decided to even start my Insta page titled Usvcrohns. I really hadn’t planned on doing this until at least 6 months of zero drugs, however, it’s started, and I am enjoying sharing recipes and pictures of what we’re doing- as opposed to pages of written drivel.

One good thing re ALL the Coronavirus chat going on is that I’m probably not as obsessed with Stella’s Crohn’s as I think I would be if there wasn’t such a hideous pandemic going on. I’m going with the theory that surely there’s only so much anxiety one brain can take? That, and I’m doing lots of praying and drinking, which helps.

We received an email explaining that Stella was categorized as high risk to Covid-19 — a stark reality check. Coincidentally, that same day, I received another email from the health board asking for ex nurses and midwives to consider volunteering to help. I debated for a while; I considered doing a night shift or two, but, I was given a row from my husband who “politely” reminded me the reason why I stopped in the first place: too risky to Stella. Also, I’d been out of midwifery for such a long time, therefore, likely I would be much more of a hindrance. Still, I feel extremely proud to know so many people working for our NHS, and thank them, as we all do, from the bottom of our hearts. 

Anyway… I think I’ve digressed…so yes, Stella seems completely well. She is LOVING the fact that her Friday nights aren’t taken over by Methotrexate. We’re even allowed to mention the word again in the house, although clearly not really needing to now. She’s happy, she’s full of energy (too much sometimes, bit annoying) and, despite having me as her “teacher” (haha!), seems totally cool re lockdown, which seems odd, but we’re going with it. 

Another positive side to lockdown, I guess, is that there’s no opportunity for Stella to go on a mass sugar binge with her friends! I don’t imagine that her wee tum would like that very much. Don’t get me wrong, we’re still allowing sugar, my goodness, but not an enormous ton at once. It is quite nice to know exactly what she’s eating and also having the time to avoid most highly processed gluten free foods, for the time being. I’m managing to make bread often enough so that she doesn’t need to eat shop bought gluten free bread; fine sometimes of course, but does contain quite a lot of ingredients, some of which I can’t pronounce. Please, however, don’t be put off: I usually don’t have the time to make bread this often (despite not working), Stella will have gluten free shop bought bread fairly often, or she’ll have gluten free oatcakes, wraps etc.

Snacks: tricky when you’re avoiding nuts, gluten, dairy, sugar, overly processed food — aaargh! Hence, the sharing of snack ideas on my Instagram page. And they’re really easy, I am not a baker and needn’t be when it comes to the snacks I’m making. Again, though, please don’t think that we “eat clean” all the time, we certainly don’t. Gluten free granola bars etc are a weekly supermarket staple; we just have to watch for nuts due to her nut allergy. This can be challenging as so many gluten free products contain nuts, therefore, sometimes it’s easier to make them myself.

So, who knows how this will all work out. As I said, Coronavirus is at the forefront of my mind, but on a personal level, I hope so much that Stella continues to thrive and avoids having to go back onto drugs. Our first appointment, post stopping drugs, has been cancelled, and so I’m not sure when Stella’s Calprotectin will be tested again. I’m just keeping my beady eye on her; subtly asking about her bowel habits, but, at the same time, not wanting to remind her too much that she hasn’t the medication back up, and thus freak her out. I’ll continue to do enough of that on her behalf. 

We will, for the foreseeable, continue to feed her a diet which hopefully continues to suit; with the added extras of probiotic supplements, as well as fermented foods, as well as a daily vitamin to ensure an adequate intake of calcium, iodine, vit d, and all the other potential deficiencies a dairy free diet can lead to. It’s quite a bit to think about but entirely normal for us now, and so worth it.  

I’d love for you to follow this now on Instagram too. It’s called Usvcrohns. Thank you. 

I do hope you all take care and stay well, or get better very soon if you are not.

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.  

Hi! Happy new year. Has been a while…

Christmas, surely, as joyful as it is, is always going to be stressful ish, with/without IBD. My particular stressors though are the seemingly infinite kids’ parties which pretty much all involve the lovely beige, gluten laden food that’s so sodding yum scrum but sadly awful for Stella and all the other lucky ones with gluten and dairy intolerances. And so, when a wee partie was coming up (and there were many!) there was of course the need to see what food was going to be provided, so I could try to replicate it with Stella friendly similars, so that she didn’t have to sit with her Bear YOYO whilst everyone chowed down on a sausage roll, etc. That said, it all went really well. I didn’t even make her have sauerkraut at any of these events, pretty sure that would have been just mean.

Parties, hideously late nights, shop bought gluten free, highly processed alternatives galore; she, and us, had a great time. FYI, gluten free mince pies are delish. 

What slightly worries me though is that with this highly processed gluten free alternatives binge, full of emulsifiers and other not- so- lovely unknown ingredients, it may not have been brilliant for her wee gut, but, as always, balance is key, isn’t it? And she did have so much fun: there was no feeling of left out, nor simply hungry at parties because she couldn’t eat anything. Therefore, I’m pretty sure a blow out of “junk” food and the odd Irn- Bru (shocking!) won’t have done much harm. My liver on the other hand, a whole other story…

What’s been happenin’?

To get you up to speed with the goings-on since my last blog post pre Summer: Stella is still doing great, and she still has a very low inflammatory marker which means that her Crohn’s is well under control. She is now 11 and in her final year of primary school (sniff, sniff).

 A brilliant year is being had by her and her pals. Her year group went away with the school to a residential week which was, by all accounts, completely successful. They catered for her dietary needs with no issues: all that was required was a phone call or two to me prior, to confirm what she could/couldn’t eat. They all had a ball. The idea was that they spent as much time outdoors, climbing trees, building dens, canoeing etc and apparently not washing for the week! Stella was in her element and returned suitably red cheeked — and manky!

The calprotectin (inflammatory marker) happened to have been checked prior to this week away and so knowing that her Crohn’s was OK I suspect made us all a bit more relaxed about her going away. Any “tummy pains” or similar we could confidently put down to nerves or something else entirely. The calprotectin result was exactly the same as it was in June: less than 30, as in zero inflammation.

Currently, Stella is still on Methotrexate but it is still the same dose as she started with two years ago, and we are hopeful that this may be able to be stopped this year. Right now, we are waiting for Stella to have a colonoscopy and endoscopy as requested by the hospital team. This will see microscopically what the gut is doing because, despite the calprotectin being low, before the medication is taken away, the Crohn’s team wish to rule out ANY inflammation that may be lurking under the microscope.

This though, rather frustratingly, seems to be taking a lot longer than we first thought. Staff sickness and annual leave during winter months means that there is a long waiting list, and so we are unsure when they will be. Stella’s scopes are elective, as opposed to an emergency need, therefore we aren’t a priority, which is fair do’s. We were told in October that they would be before Christmas but unfortunately that didn’t happen, which is fine, clearly wasn’t meant to be. It also gives me time to perhaps get back to “normal” gut friendly eating habits and early nights, which, I reckon, must impact inflammation. 

I am nervous re the scopes, quite a lot hangs on the results. As I’ve mentioned before, Methotrexate seems to be effective in Crohn’s management but it does have it’s scary long list of potential side effects, none of which I wish upon anyone. It’s difficult because we just don’t know how much of the Crohn’s is being managed by the drugs, or the diet/lifestyle. I, up until last year, assumed it was a nice combination of them both, probably mostly the drug if I’m being honest. However, since the calprotectin reduced fairly dramatically in one year from 170 to less than 30, with no change in drug management, but a further change in the diet (fermented foods being the biggest change to the existing gluten free, low dairy diet), we can’t help but wonder what role the drug is playing? Given the horrible, potential side effects and also, sorry, the fact that Stella still physically hates taking them (!), we do feel it’s worth a try to see if her wee bod can cope without them. 

The lovely hospital team is being very supportive and, despite probably wishing we would just carry on taking the drugs seeing as Stella is so well, is willing to back us up and do what’s required safely to try. This is why we are awaiting scopes: if the scopes are good and clear, then we can trial off Methotrexate. 

However, and this is annoyingly, rather huge, it’s not as simple as re starting the drugs if Stella doesn’t do so well without them. We will know this from the 3 monthly calprotectin tests and/or her symptoms. Methotrexate is a maintenance drug and so if she is having a flare up, unfortunately she will require something else to reduce the inflammation. This would be either steroids or going back to 8 weeks of Modulen (the milkshakes and no food), then going back to Methotrexate.

 The thought of this is really quite horrific to me and makes me feel panicky even writing this. We don’t fancy her being on steroids and the 8 weeks of modulen will be ludicrously hard I’d imagine, third time round, if required. Stella, however, is 100% up for it. She is willing to take the chance if it means coming off the drugs. We are backing her all the way. I have to think positively and hope that it just won’t come to that. If it does, we can’t see it as back to square one again but simply that it’s not the right time to come off medication. I just hope though that I won’t become overly obsessive this year (hahaha) with what she eats more than I already am, knowing that there isn’t the “back up” of the Methotrexate. We are very sensible and follow the diet that suits her well, but, I wonder if we might not get away with the “Christmas binge” so well this year if there are no drugs on board. I guess we just have to see. 

Please wish us luck then, eh?!

 I hope that this has helped others who may still be in the throes of modulen, medication, flare-ups and all the other difficulties Crohn’s kiddies face. We’ve since met a lovely family and going to meet another one soon who are both at the very beginning. I wish so much that they feel reassured that things can improve. Hopefully, for us, just now, we can have a managed Crohn’s with no drugs. That’s the dream anyway. We’ll just need to wait ‘n’ see.

I feel the need to share this …

Just had word back that Stella’s Calprotectin marker is less than 30!! I’m amazed. I think it could even be better than mine.

Again, to put it into some context: Stella’s first ever Calprotectin was around 1700; they admitted to stopping counting it because they thought it may reach 2000. It then went down to 70 ish after second lot of Modulen as well as Methotrexate on board. Climbed up a bit last year to 170 something, having been on Methotrexate and a gluten free/ dairy free diet. The hospital team were still pleased with this result; for someone with Crohn’s like Stella’s, they said anything less than 200 is satisfactory. Today: less than 30. (I feel like I’m broadcasting the charts!)

Anyway… Have we got sauerkraut to thank for this? Not sure we’ll ever know. But something is working, I’m so delighted, I feel giddy, can you tell?!

I was nervous about this result; Stella will still complain (to me) about occasional hip pain, which makes me worry, not knowing exactly what’s going on inside. We have had a couple of cases of loose stools recently, but clearly it’s all normal and nothing to worry about just now. The poor thing thinks we’re going to stop all the sauerkraut as a reward, hahaha.

So, there is hope, my fellow Crohn’s parents. I suspect the next thing should be a chat to the team regarding the drugs: could they be stopped? I know my husband is desperate, as is Stella. But, not for now. I know it’s still so vital that she grows and this inflammation doesn’t creep back up to scary level. I plan to relish in the joy just now that she is well, with virtually no inflammation going on. And any hip pain complaints just now I’m going to ignore — with confidence!

My new nickname, apparently. Thank you, dear husband. (Although, to be fair I probably prefer it to a previous: Sue Ellen.)

Anyway… Sauerkraut, Kimchi, Kombucha? Eh? I hadn’t really heard of any of these before I started all this. These are some of the names of the more popular fermented foods flying around. An uncle of mine lives in Korea, he talked about kimchi to me once before, but it didn’t mean much to me then. This conversation, however, might have been when I was in my 20s and consuming not much other than tomato pasta and diet coke; I certainly didn’t think all those years ago that it would be something I would be making myself, and eating on a regular basis.

There was an interesting TV documentary on a year or so ago about the world’s healthiest countries. Great Britain was not one of them, unsurprisingly. Korea was, however. One of the reasons they thought being: the cultural norm of regularly eating fermented foods.

“Fermentation promotes the growth and life cycle of good bacteria to transform the flavour and shelf life of ingredients.” I’ve quoted this straight from a BBC Good Food article.

As mentioned in my last blog post, one of the ways I’m hoping to help Stella improve her gut microbiome (and therefore, very hopefully, her Crohn’s) is by taking daily probiotics via supplements, as well as food. The worry though is that probiotics in the form of tablets/powder may not reach where we want them to reach in the gut (where it feeds off the prebiotics), as the strains of bacteria within them could potentially be destroyed by the acid in the stomach. Also, do these manufactured probiotics really contain what they claim they do? Clearly, I’m not that opposed to manufactured probiotics because I’ve been giving them to my children for years; but since I’ve discovered the art of fermenting, I feel more confident, perhaps, that there are natural probiotics, and much more of them, getting in to their little guts — and hopefully doing their job.

I’ll quote from something online that I came across which talked about a study carried out by a team of doctors who said this:

“It’s unusual to find a probiotic supplement containing more than 10 billion colony-forming units. But when a team for Dr. Mercola actually tested fermented vegetables produced by probiotic starter cultures, they found 10 trillion colony-forming units of bacteria. Literally, one serving (a few forkfuls) of the fermented vegetables was equal to an entire bottle of a high potency probiotic!”

Works for me! Also, fermenting vegetables works out a lot cheaper. Sauerkraut itself is cabbage and salt. That’s it.

Safe to say after reading this article that I felt pretty confident and inspired that my hours of chopping and kneading vegetables, as well as bribing my children into eating them, was most definitely not a waste of time.

I attempted to make my own sauerkraut first about a year ago. It did not work out! I saw too many of, what I thought were, suspiciously weird floaty things at the top. No chance was I going to feed this stuff to anyone, let alone Stella, on drugs which suppress her immune system. I chucked my attempt in the bin and looked online for stuff to buy. I came across The Edinburgh Fermentarium which is a company which make a variety of fermented foods and can deliver to your house. It’s also non pasteurised, which is important. Sauerkraut that you can buy in the supermarket will likely be pasteurised and so pointless if you are taking it for the purpose of probiotics; the heat required to pasteurise will perhaps kill off the good bacteria.

We got into the (lazy) habit of ordering jars of fermented food from The Edinburgh Fermentarium. They were delicious, nicely packaged (!), always prompt delivery but I couldn’t help but think…surely I could do this myself?

One of my wonderful friends, equally into gut health, told me about a Gut Health workshop, focusing on fermenting foods, taken place earlier this year. We went together, armed with our new notebooks (losers), learnt loads, and best of all, ate a ton of delish fermented food. Beetroot and walnut dip on fermented raw kimchi crackers, anyone?

It was hosted by two lovely GPs who specialise in lifestyle medicine, with a lady called Janice Clyne, aka The Fermenting Queen as I’m now calling her, who taught us, step by step how to do it. It was a really inspiring event, helped by someone who testified that her own ill health had dramatically improved after shifting her focus into what she was eating and her gut health.

I’ve since been determined to continue preparing and feeding us all fermented food, mostly vegetables so far. I’m also giving some to our neighbours — whether they like it or not!

It’s really not difficult. The hacking of the vegetables into tiny slices is probably the hardest – but then I’m thinking I just need a new knife.

I’m aiming to always have enough sauerkraut (or kimchi, whatever) available to have at least once a day with dinner, and at least a teaspoon or 2 amount. I had been sneaking it underneath the girls’ dinner but then smarty pants husband pointed out that it might be heating up too much therefore losing its benefits, so I’m just putting it to the side with whatever they are having, and they have to eat it — or no pudding, usual age-old bribery.

My fave at the moment is a pineapple, ginger and turmeric kraut. It’s really delicious. It takes about 5 – 14 days to ferment (the longer the better) so currently waiting for that batch to be ready. Meanwhile, we’re still going through a jar of sauerkraut that another wonderful friend made me. We all appear to be a bit obsessed with this.

Another one we use regularly is my fermented garlic (who knew?) This goes with pretty much everything. I just drizzle it on like a dressing onto whatever and it tastes great.

Please, if you want to learn more about fermenting foods, visit nourishedbynature which is Janice Clyne’s fabulous blog. She shares a ton of plant based and fermented recipes, as well as dates of future workshops.

This is my finale blog post, yay! I’m thinking I really ought to get back to actually doing all the things, as opposed to writing about them. I have actually enjoyed it, has been cathartic, ish. But, it was only ever going to be about our journey from when it all kicked off to the present time; to hopefully spread the word about what we think might be working for us. It may not work, as I keep saying, it may be just the drugs themselves that are keeping Stella in remission, but my gut feeling (no pun intended) is that it’s all going to be beneficial for her and our health anyway, Crohn’s or no Crohn’s.

So, off to the kitchen (with my new little pantry) I go, to carry on my mission. To continue to feed Stella the most nutritious food that I possibly can which suits her, while trying to stay sane in the process. And who knows, maybe things will improve, or at least, stay as they are; and our unbelievably brave and courageous wee girl remains well — and might even keep her six-pack.

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Thank you to Tracy Mackenzie for the all your time spent helping me at the beginning; and for the homework!

Thanks to my Brother in law, David, for your almost weekly tech input — but have you even read ONE?!!

And obviously, thanks, poor, long-suffering husband, who I’m sure has regretted buying me this laptop; and is looking forward to being able to get on with his own work without having to be constantly interrupted to read — and read again these posts.

Some people have suggested I continue this on Instagram later with maybe recipes etc, but I know that Instagram involves being short n snappy, which clearly I’m no good at. I might, if anything, post updates regarding Stella’s progress once in a while, I might post these here too if anyone is interested. You’ll find me on usvcrohns on Instagram if I do.

Thank you SO MUCH for reading.

Gut health is a huge topic right now. I feel it’s all I hear about. Maybe it’s just me though, because, admittedly, I’m fairly obsessed with the subject. We have a dog now (succumbed, eventually) and I like to listen to health/lifestyle podcasts during my dog walk where gut health is talked about a lot. The podcasts I particularly like are Dr Chatterjee and Deliciously Ella.

Ella, as in, deliciously, was apparently so seriously ill with a rare disease at university that she became wheelchair bound. She decided to take action and consider what she was eating; she drastically changed her diet and in turn, over time, made herself well again. Totes inspirational. There’s more about this in her book “Deliciously Ella” by Ella Woodward.

For now, Stella seems to be doing really well with her Crohn’s. She’s gaining weight and growing; she’s happy and has an abundance of energy. She does numerous sporting activities in the week: aerial yoga (I had no clue either, turns out it’s excellent for core strength and general well-being), netball, swimming, and football at lunchtimes at school. And she has an actual six-pack. Crohn’s doesn’t appear to be holding her back.

But… I do worry about what the future holds for her. I don’t Google Crohn’s Disease as such, that much, it frankly scares me; I find it really negative, so I just avoid it. What I am very keen to research and find far more positive, however, is gut health; and the latest findings re the impact improving our gut health can have on our overall health. Unfortunately, what I now think is that the v annoying lady off the tely from years ago who was obsessed with poos and what we ate? She was probably right all along, damn her.

Again, no health professional has mentioned gut health to me in relation to Crohn’s. I think there’s a lot of research going on in the background into Crohn’s and gut health, but nothing has been revealed to us as yet. What we’re doing with Stella regarding her gut health is again down to our own research. The more I read about it the more it makes sense why she may have this disease, and that maybe, just maybe, her gut health can be improved so much that her Crohn’s doesn’t ever become too much of an issue? That’s my MASSIVO goal, anyway.

“All disease begins in the gut”

Hippocrates of Kos, the father of modern medicine

I’ve quoted this from my favourite gut health book: The Clever Guts Diet by Dr Michael Mosley.

This book has been a bit of a saving grace for me. As I said before, my husband bought some trying- to- cure Crohn’s book, it wasn’t for me; it was too complicated and overwhelming.

Michael Mosley seems to be equally obsessed with the gut microbiome and its role in health. His research is fascinating so if you are eager to learn more about it, please read his work.

The gut microbiome: my attempt at an explanation.

My basic understanding is this: for years we’ve been led to believe that bacteria is the enemy. We thought all bacteria was bad, didn’t we? We were/are lured into buying antibacterial wipes, antibacterial soaps, sprays, hand gels. We popped antibiotics at the drop of a hat at the first sign of a UTI because we still needed go to work (or maybe that was just me?)

I was also certainly the person relieved when an antibiotic was prescribed to my child who had a bug that didn’t appear to be shifting after a day or two — for fear it would turn into something worse.

Antibiotics are HUGELY necessary a lot of the time and clearly save lives. Thank goodness for them. I’m also not suggesting for one second that you shouldn’t give your child an antibiotic if they’re unwell, or if you have a urinary tract infection; I still do, on both accounts. But, I understand much more now about the seemingly lasting effects that these antibiotics can potentially have on your gut health, after they’ve done their necessary job in killing off the bad bacteria.  

I reckon I was head of the team of the Bacteria Hating Massive. I now wonder what impact this has had on Stella’s gut health and therefore maybe her Crohn’s? Eek. BIG confession. And I might be way off the mark. I really don’t know this, but the more I understand about gut health, the more dots I’m joining. (There’s nothing quite like blaming yourself, is there?) I don’t actually blame myself though. I maybe blame my anxiety, and total ignorance.

From the moment I became pregnant with Stella, I was hooked; I was dead set on keeping this little growing thing well and doing what I thought was the right thing (as most parents do). I worked in a neonatal unit where things had to be sterile; I also nursed very sick babies. To say I was anxious during my pregnancy with Stella, is an understatement. When she was a baby, I kept things as sterile and as clean as they could be with my wipes, sprays, hand gels; for absolute fear that she would contract a nasty bug and become unwell (ironic, eh?).

Stella did also have a UTI when she was about 9 months, so she received (necessary) antibiotics. The first lot didn’t work, so she was given a second lot, a broad spectrum. Stella was born by caesarean section. There’s growing evidence showing the difference the method of delivery can have on a baby’s gut microbiome, with not having the same colonization of Mum’s bacteria. Thankfully, I gave her a ton of skin to skin contact and breastfed her. By the way, I’m not suggesting that all babies born via c section are going to have similar problems. My other daughter was also born by c section, and doesn’t have any gut issues, I don’t think, anyway! You can find much more information about this in Dr Michael Mosley’s book “The Clever Guts Diet” referred to earlier.

The other thing worth mentioning is that I had quite a few courses of antibiotics during my pregnancy with Stella; with my 2nd child, not as many antibiotics, but actually I took probiotics. Could this have made a difference? I’m not sure.

What I didn’t understand was that actually we have TRILLIONS of bacteria living within us. Some good, some bad. Each one playing a role in helping our bodies function. This is my simple understanding of the gut microbiome: the host to the bacteria living inside us. The healthier and more diverse the microbiome, the healthier the person.

So, I reckon that Stella’s gut microbiome is perhaps, eh… not great.  

The caesarean section, the antibiotics, the compulsive Dettol spraying of her changing mat. The missed opportunities to roll around in the dirt and chew at her fingers full of soil (how I wish I could go back in time). Did this, in turn, kill off too much of the good bacteria, as well as the bad? Was it all just too clean? Is this what they mean by the term Dysbiosis: “An imbalance between the types of organism present in a person’s natural microflora, especially that of the gut, thought to contribute to a range of conditions of ill health.” I’ve quoted this dysbiosis meaning directly from Google dictionary.

I’ve obviously no proof that the underlying root cause of Stella’s issues is dysbiosis. This is just what I think. I’m certainly trying not to beat myself up for what happened to her in the early years.  

But, here I am now, on a bit of mission to try to change this dysbiosis for the better. Whether it makes any difference to her future, or absolutely none, at least I feel I’m trying- and I really don’t think it’ll do her any harm. It’s one thing cutting out gluten and dairy from Stella’s diet to hopefully keep inflammation low; the other thing that we’re trying to do is feed her lovely wee gut with PRObiotics, the good bacteria (almost like an antidote to antibiotics) and hopefully shift this dysbiosis = a healthier gut microbiome = a healthier Stella.

How we’re doing this?

Well, we’re:

Aiming to avoid unnecessary antibiotics; I also now steer clear of antibacterial hand gels, soaps, sprays. For kitchen surfaces, I just use a bit of washing up liquid and a cloth. We use a soap, obvs, just not one that’s mega antibacterial. It has zero appeal now! I’m definitely more into general dirt being key here. We live rurally, on an old farm, which is great; the girls get lots of time to play outdoors. I like to think of all this good bacteria from the trillions of organisms from the great outdoors will eventually help? Again, relating back to my husband’s upbringing on the farm: seemingly they frequently played outside, assisted with the animals, then ate sandwiches for lunch outside after simply wiping their hands on the clothes. Sl. gross, but didn’t seem to do them any harm; and might take into account why he and his siblings are rarely ill.  

We eat probiotic foods (my next post goes into more detail about how we do this); as well as taking probiotic supplements. Stella takes one called VSL#3, and another one called Acidophilus Plus, seemingly helpful for nut allergies. I read online somewhere that people with nut allergies are maybe lacking in bacteria called Lactobacillus rhamnosus? This particular probiotic seems to contain it. She’ll have this mixed into her coconut milk every morning. No idea whether it’s making any difference, but if it helps, it’s worth it.

We eat prebiotic rich food. My basic understanding of prebiotics is essentially food ingredients that your body can’t digest, therefore, when you eat these foods they sit in your lower intestine, allowing the probiotics (good bacteria) to feed off. This is apparently necessary for allowing all this good bacteria to thrive and multiply. I’m fairly fascinated by the whole thing. Seemingly, good prebiotic rich foods are: wholegrains, onions, garlics, bananas, leeks, asparagus, chicory root and jerusalem artichokes. (?? Was my initial reaction when I read jerusalem artichokes; they are a nice veggie, nice in soups.)

We aim to eat as big a variety of fruit/vegetables as we can. I’ll quote my other favourite celebrity doctor, Dr Chatterjee, who says this:

“Eating a diverse diet rich in fibre is one of the single best things we can to live a more stress – free life, a diverse diet means a diverse and resilient microbiome. If we increase the variety of vegetables, low glycaemic fruits (such as blueberries and cherries) and fibre – rich foods such as beans and legumes in our diet, we’re increasing the amount of fibre we’re eating. This will encourage the growth of different and happy bugs, sending signals to your brain that everything is good.”

I first heard about ‘eating the rainbow’ from Dr Chatterjee, this means aiming to eat as many colours of fruit and vegetables as you can. Each vegetable apparently has its own phytonutrient, each having its own benefit to our health.

Bone broth is another thing we make fairly regularly to boost gut health. Apparently, it’s been used for years, again, channelling Granny! It’s supposed to be full of collagen, gelatin, calcium and magnesium. We cook a chicken then use the carcass and the bones to make bone broth in our pressure cooker. I’ll then use it as a stock for soups and stews.

We try to have low sugar, ha! Virtually impossible when you have a pair of sugar addict children. It doesn’t do Stella’s gut any favours, therefore we try to save sweets for the weekend, doesn’t exactly always work though. I don’t really know about the evidence re sugar and the microbiome; I read an article online from Hyperbiotics which claim that “When we eat a high sugar diet, the undesirable bacteria thrive and start to grow out of control, while our beneficial bacteria dwindle in number.” Apparently this was backed up by a study on mice.

What I do know is that sugar is highly addictive and if Stella has too much in one sitting, hip pain and loose stools are a given. So, no thanks, sugar.

As I said, and will keep saying, who knows whether all this is making any difference, as a parent though, it’s nice to feel that you might be helping. Seemingly, some people with Crohn’s or IBD struggle to eat high fibre foods, as mentioned in my 4th blog post. I’m so glad that Stella seems to be able to, I think if anything is going to alter her microbiome for the better; a diverse diet, full of fibre, just might.

Please note, I’m not a speaking here as a health professional; I’m simply a parent trying to do what I can do to help our situation. Thank you.  

Is what I’m asked — often! One darling friend literally laughed at what I was feeding Stella for lunch one day. Sardines on gluten free oatcakes was certainly not a “normal” lunch choice as far as she was concerned. It was all ‘in jest’ of course and given how much this friend and I go back, I didn’t take offence; neither did Stella, more to the point, who happily tucked in.  

Admittedly, I was feeling very overwhelmed; sardines and oatcakes were easy enough but what else could I give her? 21 meals made from scratch every week suddenly seemed like a gargantuan task.

I had a moment of clarity: Gluten free, dairy free (ish), low inflammatory, high fibre, etc, sounded way more complicated than it needed to be. I decided that in order for me to stop feeling so scared and overwhelmed, I would simply start channelling Granny!

It occurred to me that if I just stuck to the basics: simple food, like what I would have had visiting Granny and Grandpa years ago (except maybe sl. less sugar: two puddings on offer was Granny’s trademark). The way their generation cooked and ate food, and, incidentally, the way my husband’s family ate too growing up (dairy farmers and so VERY traditional food was had!) seemed both appealing and doable. A simple dinner of soup followed by meat, potatoes and veg was achievable, surely? As well as meeting my criteria of being suitable for Stells.

I’m going to share roughly what she eats and you can see for yourselves whether it’s weird or not. She’s enjoys her food, thank The Lord, and is probably the least fussy eater I know, next to my nephew, but he would eat literally anything, I’m sure he ate cat food.

Breakkie…

Gluten free porridge oats which I will have soaked in water and apple cider vinegar the night before. Weird? Probably. But I read something about soaking oats allows them to digest better. Apparently this method has been around for years and years and this is actually what my grandparents’ generation would’ve done. If it’s good enough for them …!

Stella will then drain the porridge then pour in coconut milk to heat through. We’ll all have this. Apart from my husband who still insists that Branflakes and crunchy topping is the only breakfast option, ever.

Stella will have a whole load of chia seeds on top of her porridge and maybe flax seeds with a wee bit of maple syrup. She’ll then have gluten free oatcakes or toast with honey and butter.

Weekends she’ll have any gluten free cereal, Cocopops or Honey Flakes are the fave. She’ll maybe have pancakes or toast afterwards. And that’s breakfast. All very normal for us and doesn’t cause her any issues.

Lunch…

Usually she’ll take a packed lunch to school. She’ll have oatcakes, bread, or crackers (gluten free); topped with either sardines, mackerel, olive tapenade, chicken or a nut free chocolate spread. A salad on the side with seeds followed by fruit, as well as a packet of crisps or a gluten free bar, of which there are tons on the market; I try to go for ones with the least sugar. A lot of them have a ton of sugar. Clearly when you remove one thing, something else is replaced. I’ll look at the ingredients list; if the list is as long as my arm, containing items that I’ve never heard of, I’ll tend to avoid.

She‘ll eat in school once a week, usually a baked potato with tuna or baked beans. Jelly for pudding. Unfortunately, there’s not much choice for Stella to eat at school, hence the packed lunches.

I make a lot of soups, usually bone broth based from a chicken that we’ve eaten. She’ll take this down to school in a flask some days too.

We do have a McDonald’s every once a while- usually when one of us is mildly hungover and only a McDonald’s will cure us! There she’ll have a burger and chips, and we’ll provide the gluten free roll. Perhaps not ideal on a regular basis for her — or any of us – but fine on occasion and clearly good for the soul, yea?

Snacks…

Anything really, she has fruit — “encouraged” by me, although she’s obsessed with pomegranate seeds at the moment. After school, when she’s allegedly starving, she’ll have a couple of biscuits or a cake or bar (GF) and fruit; water or hot chocolate made with coconut milk.

She also loves an egg. So much so that her thing after a hospital appointment is to visit the cafe to have one of the little pots with egg and spinach? Not that usual for a 10 year old probably, but it works for her and she loves it.

Stella is of an age now where she’s out ‘n’ about with friends. I know that going to the shops and buying a few quid worth of sweets after school is tempting, especially when her friends are doing it. This is when it’s difficult; she knows if she has too much rubbish, she’ll not feel great. I can warn her, of course, which I do; but she kind of has to also figure this out on her own.

Dinner…

It’s still fairly simple but I have been mixing it up! It’s usually soup then chicken or fish with potatoes, rice or pasta (all GF); as well as variety of veg. Much more veg than I would have added before. I aim to buy a new veg that we’ve maybe not tried every week; and not just stick to the usual. I’ll ensure that most days we have at least 5–10 different fruits/ veg a day. Easier when you’ve managed to pack a lot of them into soups, stews, chilli, etc. I also use the pasta made from green peas or chickpeas. They’ll be more chat about this “rainbow eating” later.

I love a leftover, so we could have chilli for a couple of days or bolognaise or leftover chicken dishes. Jamie Oliver has been a massive help with this because like I said before, I was SO NOT A COOK. I felt intimidated by cook books with recipes that looked gorgeous but not basic enough! Jamie’s 30 minute meals book was a definite help. I figured if he could make something in half n hour surely I could make it in a day?

We go out for dinner sometimes. Maybe once a month, two months or whatever. We tend to stick to the restaurants that are good for catering for allergies: Zizzi, Pizza Express are definite faves. It’s great, we’re all happy. Having a child with allergies and Crohn’s disease definitely does not stop us doing normal things like eating out.

Stella goes to her pals’ houses for dinner fairly frequently, as well as sleepovers. I do worry a bit about accidental gluten contamination because I don’t expect other people to be as neurotic as me — is anyone? For example, the parent might thoughtfully buy in gluten free bread but I then have to (awkwardly) remind them about not using the same toaster and to pop the bread under the grill, please. I’ve since learned that you can buy toaster bags for putting bread in which avoids cross contamination. Result!

The nut allergy thing isn’t so bad because it’s been drummed into people for years now that she has nut allergies. Stella’s very good herself and has no issues about reminding people what she can’t have.

Recently, Stella went away for a two night Scripture Union camp, was brilliant fun for her and completely stress free. The chef rang me a week or so before to discuss Stella’s food and assured me that there would be no issues catering for her needs. Was fab and totally appreciated.

My stress used to be when it came to parties as party food is full of the gluten: sausage rolls, sausages, garlic bread, all the yum stuff that kids gorge on. However, I now know where to go for the gluten free range and can freeze it in advance, if necessary.

Aside from Stella having a rubbish time with Crohn’s, my bigger worry, genuinely, is that my girls end up having an unhealthy relationship with food, because we have to be so careful.

I have said (jokingly, ish) to my husband that if we get through this without a divorce and/or child with an eating disorder, it’ll be a miracle. I’m so aware that as a family we have to watch what we eat, obviously Stella in particular. I just hope that we can continue to do it in as positive a way as we can. And I think we are. We eat together and as I said, aside from the Branflakes, we all eat the same. I have to say though (sorry, Stella), it’s really nice going out for a coffee with my other daughter and not have to worry about whether what she’s chosen contains nuts or gluten! Thankfully, though, there’s such a change for the better now when it comes to choices in coffee shops and restaurants. There’s pretty much always something for her to have.

Round 2 Modulen was complete, Methotrexate started, and Stella was finally declared In Remission. Yay! Her Fecal Calprotectin (inflammation marker) was 73, or thereabouts – Phew! A LOT nicer than 1700.

We were delighted. However, I started to worry (of course) that when she began to eat food again, despite being on medication, that this inflammatory marker would creep back up.

We knew that Stella already had a few food intolerances, we knew this thanks to “Poo Diary.” We knew that, for example, gluten wasn’t looking like it suited her, and possibly neither was too much dairy.

We were pretty desperate for a diet plan which would best suit Stella. We wanted someone to give us one, tailor-made, which would work with the Methotrexate and allow this remission to continue, ha! Surely not too much to ask?!

We realised quickly that this was indeed, too much to ask. The hospital team is wonderful with what they do but they obviously cannot give tailored dietary advice to individual Crohn’s patients, least not children anyway. I imagine this is because, as it stands, there doesn’t seem to be any evidence that certain diets work well to limit flare ups in Crohn’s. Plus, also, what works for some, might not work for others, so where would they even start?

Their advice is to follow a healthy, balanced diet which of course makes sense, however, we were concerned that this alone, might not work for Stella. And also just not blinking prescriptive enough for me (the neurotic). I had to do a bit more investigating into what food might work better for her, and what might not.

Through my investigative work (!), I read and heard, anecdotally, past tales of much older people who were diagnosed with Crohn’s in their teens/twenties, a lot of them ended up having to have parts of their bowel removed and some now have colostomy bags. Their quality of life now so much better. A pattern emerged after reading a few similar cases that these people perhaps had Crohn’s undiagnosed for years, ate their usual diet, but suffered; it occured to me that Crohn’s was maybe not managed very well back in the day. Lucky for us, as far as I’m concerned, it is now.

I’m surmising that these older Crohn’s sufferers would have experienced years of intermittent flare ups, unsure of the cause. When Crohn’s was eventually diagnosed and treatment given, scar tissue in the digestive tract was often left as a result. This meant that eating certain foods, particularly high fibrous foods, was difficult and caused pain, resulting in a limited diet of much less bulky/fibrous foods? From what I’m reading now, it would seem that eating a diet low in fibre, whilst necessary in some cases, isn’t all that good for health – more on that later.

I then started to understand the difference between these much older people with Crohn’s and our wee girl. The difference being, we reckon, is that Stella’s was picked up early therefore thankfully no scar tissue formed. We believe that this is the reason she can eat a huge variety of whole, high fibrous food without it causing any pain, for now, anyway. For her gut (and overall) health, we’re hoping that this ability to eat highly nutritious, fibrous foods can continue.

Initially, around the time of diagnosis, I had thought that feeding Stella a diet of low inflammatory foods would be the answer. It wasn’t!

I had done lot of research into low inflammatory foods and it made sense to me; we would stick to things like fish, fruit and vegetables, whole grains, oatmeal – apparently known low inflammatory foods. We would avoid, or at least cut down on, high inflammatory culprits such as highly processed foods and refined sugar. I even took my first trip to Wholefoods and fell in love with the place- it shut down a month later ( just as well because it was a small fortune). We tried this diet for a couple of months but, frustratingly, alone, it didn’t work (hence the 2nd Modulen period was required). We think now that it had something to do with gluten.

We’d had a particularly memorable weekend with friends just before the diagnosis; we had given up trying to think of what could be the reason for the issues and let her eat whatever she wanted. It was pretty hideous; she ate a lot of rubbish, and amongst it was a lot of gluten. She suffered terribly. There was a lot of pain, as well as bloody stools, not just loose, which was bad enough. It was the worst I had seen her. There’s no way we would feel comfortable letting her eat gluten, which clearly her body doesn’t like – whether she is on Methotrexate, or not. Just to point out, prior to this weekend, we had been reducing gluten, and it seemed to work for her. Again, we knew this our trusted friend, Poo Diary.

We arranged for Stella to have a food intolerance test carried out, just to confirm our findings: it did. Gluten and cow’s milk came back as highly intolerant, as were nuts (least we knew then that the test was accurate!) Butter was okay, which was excellent news because she loves the stuff.

I’m well aware that it’s probably rather odd to be so concerned every day with someone else’s bowel habits, yet we’ve completely normalised it in our own way. It seems to be the easiest way to reassure us that things are okay and what she is eating is suitable – (we hope, anyway). Similar to the sun care regime, however, I’m well aware that we’re getting away with it just now because of her age. I’m not convinced me asking “Poos okay, love?” every day when she’s 17 is going to be met with the same compliance.

But we do this enquiring fairly frequently and I still now, even though she’s been declared in remission, and has been for about a year a half now, breathe a sigh of relief when there are normal stools and no hip pain complaints. Most days I feel like my nerves are shattered. I’d love to know if other Crohn’s parents feel the same? This disease seems to be fairly unpredictable for some people. It’s like I’m anticipating a flare up, which I know is not a helpful mindset. But I know we could have it a lot worse, and also that this endless worrying comes with the usual territory of being a parent.

So, after all this, we came to the conclusion that a diet that would suit Stella would be: Gluten free, mostly dairy free; low inflammatory, high in fibre, healthy and balanced. Good grief.

Going gluten free definitely took some time to get used to, there were a couple of times when Stella was symptomatic (sore hips and loose stools) but we were able to trace it back to an accidental gluten ingestion. FYI, strawberry laces contain gluten, who knew? Another time was a stock in soup which contained wheat. Woops.

Dairy free has been helpful, we think, in terms of keeping inflammation down. We are hoping, however, to reintroduce dairy back in to Stella’s diet, because I’m all too aware of the health benefits that she is missing out on. Dr Michael Mosley (who I love) spoke recently about iodine levels and the concern that he has for people who follow a dairy free diet (Great! More worrying!) Iodine is apparently abundant in dairy, more so in full fat milk. Ideally we’d love Stella to tolerate a cup of full fat milk and to incorporate regular yogurts etc into her diet, but we’re a good bit away from that just now.

It’s a bit daunting deciding to cut out a major food group, like dairy, out of your growing child’s diet, especially for people like me who just want to follow guidelines when it comes to anything kids’ health related. I certainly didn’t do this with confidence and, as I said in my ‘disclaimer/ of sorts’ in my first post, no health professional advised us on this, this was purely us trying to figure out what to do ourselves.

My first thought regarding no dairy was to panic at the obvious thought of her not having enough calcium. However, after establishing a diet suited to her, I calculated her daily calcium intake and found it to be the right amount for her age. Fortunately, Stella likes to eat calcium rich foods like sardines (the ones with the bones help this), green leafy veg, beans, seeds- her absolute fave is chia seeds which are really rich in calcium, although very expensive, dammit! Coconut milk is what we use just now for her, and I’ll go for the one which is fortified with calcium and other vitamins. Gluten free bread is also fortified and she has a calcium and vitamin D supplement every day. As I said… not confident!

Currently, we are trying her with little bits of live yogurt and so far so good, although I think maybe too early to tell. I’m hoping that this can build up and eventually dairy can be included in her diet – with no negative effect on her inflammatory marker. Her next Calprotectin test is in June so will be interesting to see the result.

What I do find with this whole thing is how expensive high quality food is. It seems to be cheaper to buy processed ready meals for your dinner than it is to buy whole foods, sadly. Gluten free food is insanely expensive, I read somewhere that going gluten free costs a family an extra £2000 a year. I can believe it and because Stella isn’t Coeliac, we don’t qualify for discounted gluten free food. So I cook as much as I can from scratch and meal plan to the nth degree. That statement alone will be HILARIOUS for my friends to read. I was a terrible cook. I didn’t even really try. My entire 20s consisted of eating pasta with tomato sauce, from a jar. And eating out. It’s pretty shocking that it took something this for me to finally realise how valuable quality food is to health, not just for Crohn’s. Anyway, onwards n upwards….

I received an email from the Crohn’s team nearing the end of the 8 week Modulen period, inviting us for a meeting to discuss medication. I hadn’t realised medication was required. During Modulen time, Stella had gained weight, grew a bit and felt amazing. In my naivety, I thought that was it, cured! Sadly, I quickly realised that this wasn’t the case.

We had a meeting with the team to explain to us that whilst the Modulen appeared to have done its job; looking back to the scopes a couple of months prior, they had identified widespread patches of inflammation in her gut, not just localised to one area. In these cases of Crohn’s disease, apparently medication is usually needed. If not, there’s a good chance of symptoms re emerging. The medication of choice here being an immunosuppressive drug.

My understanding of Crohn’s disease is that it occurs when the body’s immune system attacks the gastrointestinal tract, which is perhaps why drugs which suppress the immune system are effective in managing the disease. Unmanaged, Crohn’s disease has the potential to bring on a whole host of horrible symptoms; symptoms of which Stella had already presented prior to diagnosis (although thankfully not them all): pain, diarrhoea, lethargy, weight loss, and malnutrition — because the body just isn’t able to absorb nutrients from food. We’re told that these symptoms are due to inflammation occurring in the gut, a “flare-up” in Crohn’s is when these symptoms present themselves. I believe that the more flare-ups you have, potentially the more damage to the gut.

For the little people with Crohn’s, like Stella, my worry is that if it is unmanaged, she won’t grow properly as well as there being a risk of puberty being delayed. I’ve heard it can also potentially weaken her bones. All a bit scary. So, yes please to any medication going to reduce these risks, thanks. If only we didn’t have to read the small print/possible side effects. But, as my good friend pointed out, if you read the small print on a packet of Paracetamol, you probably wouldn’t want to take that either. Therefore, trusting the experts again is what we did. We weighed up potential side effects versus the potential risks of a poorly managed Crohn’s child and it was a no brainer. At 8 years old her body needed to grow properly, there was no arguing this.  

Given that they suppress your immune system, these drugs can therefore potentially make you susceptible to picking up a lot the nasty bugs going round, that said, we’ve not found this to be too much of an issue — not yet anyway. There have been times when all of us in the family, apart from Stella, have had some sort of vomming bug — but not the girl on the immunosuppressives? Weird.

It does bring me more anxiety than normal when Stella has a sore throat, for example, because we worry that it may lead to something more serious. When she has had a sore throat, and it has happened a couple of times, I am on it like a crazed mother with my elderberry syrup (I swear by this stuff), Calpol, fluids, rest and compulsive temperature taking. Anti inflammatory drugs, e.g Ibuprofen, aren’t recommended for Stella so it’s Calpol only.

We really don’t want Stella to have antibiotics (more about this later) unless absolutely necessary, so I’ll try to do anything to avoid them. Fortunately so far, my overzealous nursing skills — and luck — have resulted in no antibiotics being needed yet.

My main, lovely paranoia re these drugs is the side effect of the slight increased risk of cancers, including skin cancer documented on the Crohn’s and Colitis UK website. To combat this, our Stells in the summer months gets a factor 50, broad spectrum, no less, slapped on her every couple of hours- as well as a very fetching All in One number and a hat. And sunglasses. Thankfully she doesn’t care what she looks like, least not just now. I’m well aware, however, that this is likely to change as the teenage years approach us.

The current immunosuppressive drug that Stella is on is Methotrexate which appears to be doing a grand job at keeping flares at bay.

She doesn’t exactly love taking them though. Probably on a par with the needle poking as being the worst thing about having Crohn’s. Thankfully it is just a Saturday that she has to take them. There are 3 tablets to take, she has her drink of choice and a something nice lined up for eating afterwards. She takes a Folic Acid tablet too on a Friday night, this is to help reduce symptoms of nausea etc which Methotrexate can bring on.

One of the lovely nurses introduced her to a brilliant App called Hospichill which is like a meditation app to help her take them. It has helped, ish.

Before we discovered that Methotrexate was the right drug for her, we had a really rubbish time trying to get one which suited. The first one was called Azathioprine. A week or so in she had a horrible vomiting side effect, not that unlike The Exorcist. We had to stop it, then restart it to see if it was the drug causing this… Again, the vomiting happened. It was pretty severe, it was just as though her body was completely rejecting it. Azathioprine was therefore abandoned.

Next choice of drug was one called Mercaptopurine. This appeared to be fine until cruelly, two weeks in, nasty symptoms started: high temperatures, bit of abdominal pain, all a bit vague; nonetheless, required evening admissions to A ‘n’ E. These symptoms weirdly only ever came in the evenings, therefore, I couldn’t ring my right arm/Crohn’s nurse for advice as she had already finished her shift. It was a particularly crazy week that week, we were in A ‘n’ E three times because we were told that if she had a high temperature then the medical staff would want to see her to determine whether it was down to a normal side effect or whether it was the beginnings of Pancreatitis. It was a very frustrating and worrying week.

And as it happened, it did end up being the beginnings of Pancreatitis. Thankfully caught early and so no horrible lasting damage. Mercaptopurine was stopped immediately and, in terms of moving forward with treatment, we were a bit stuck as to what to do next. Apart from my husband who was secretly quite delighted that his daughter’s clever wee bod seemed to be rejecting all these nasty drugs! He, at this stage, had already bought this how to cure Crohn’s book and was convinced we could cure her by diet alone. I was ready for punching him if he mentioned the word “paleo” one more time. In fact, I totally did.

The following day Stella had already started to feel better, we were at home and one of the amazing nurses rang me. I was almost laughing with her at this point with how ridiculous this whole situation was all becoming. Plus VERY sleep deprived from all the midnight A ‘n’ E admissions — never helps the hysteria. This nurse, who I frankly adore, decided enough was enough for now and said to give Stella a break from the drugs. It was good to hear. We happened to be going on holiday to Wales three days later so it all worked out. We went on holiday, we had a brilliant time. No side effects from drugs, nor flare-ups occurred. What were we feeding Stella at this point? I’ll also get to that on a later post. Paleo diet not being an option. Certainly not for a wee thing with a nut allergy.

Steroids? Or Modulen. Again. Bummer.

We came back from Wales. Ready for taking on the next challenge (not really!). This challenge being: a re-test of the Faecal Calprotectin (inflammatory marker) which, to our dismay, came back as very high again. This meant that she was not in remission. Unfortunately, those few months of starting and stopping drugs and not having the correct immunosuppressive in her system meant that her gut became very inflamed and likely a flare up would develop. We had been told of this Methotrexate, which we were planning on starting soon, but, due to the fact that the Calprotectin was so high, her body needed more than this just now. She needed either a course of steroids or to repeat the same course of Modulen for 8 weeks again. It was our call.

This was really difficult news to hear. (It happened to be on my birthday — completely besides the point but thankfully I’d had a glass of fizz before the phone call!)

Despite the fizz, I was ultra nervous asking Stella what she wanted to do. My husband and I had already decided that we didn’t really want her on steroids if we could avoid it, but I knew that asking someone to, again, have no food for 8 weeks only a few months after the first time, was a major ask. However, Stella, being the absolute trouper that she is or possibly just hoping to be the next Alan Sugar, asked “Will I get paid a pound every day again?” And that was that decided. Another gruelling 8 weeks of milkshakes was going to start.

It was definitely tougher second time round. Stella was amazing again and still not a moan, but she was a bit blinking fed up at times. Plus we didn’t have room for 56 more presents (!) — or more rabbits.

It was at this point that I decided to essentially chuck my job — or at least take a career break. I was stressed at work, stressed at home and I had an epiphany. I knew that I needed to focus on this and see what things I could do, as well as the drugs, to keep her well.