When Crohn’s is first diagnosed, a treatment plan is to go onto a liquid diet for a couple of months, to essentially allow the gut to rest. The aim being to bring Crohn’s into remission. This was certainly Stella’s first line of treatment. This liquid diet came in the form of a milkshake called Modulen and she was to drink this 6 times a day, every day for 8 weeks. She was also allowed some very random extras: Foxes Glacier Mints, 7 UP and sugar free chewing gum. Literally nothing else – apart from water. All very bizarre.

Having to explain to your child that they’ve to drink milkshakes but have no food for 2 months is a really weird conversation. The poor thing burst into tears having remembered a conversation with her Daddy a few weeks prior during “The Island” about not surviving 3 weeks without food! Was awful! It took a big chat to reassure her that food was being directly replaced by the milkshakes and that she was most definitely not going to starve. Was really hard.

The next thing was seeing if these milkshakes were palatable. We had been warned by the nurses that some children hadn’t managed to drink all of them in the day and so what they couldn’t drink, they had to have via a nasogastric tube. This would mean going to school with a tube fitted. Not ideal. Was a real nerve wracking moment getting her to taste the first shake. We were allowed to mix it with a Crusha milkshake flavour, she chose to try chocolate first (clever girl) and to our relief she liked it. I’ll never forget her face lighting up and saying “It’s really nice!” (Obvs then I burst into tears.) We also used some super duper, highly researched (by Daddy) blender to get it as liquidated as possible. This definitely helped. We bought in a monumental supply of Foxes mints, sugar free chewing gum and 7 UP (just in case the shops would somehow run out?!!) – and enough Crusha chocolate syrup to last a lifetime. We actually still have some left.

She did ridiculously well. Helped of course by the usual bribery tactics of cash from Gran ‘n’ Gramps, £1 a day was the rate. I also bought her 56 cheap, mini prezzies (thanks so much, Flying Tiger) and each night our youngest would place a wee present for her under her pillow. Just what our house needed: more useless tosh lying around. But this all helped. We also, in absolute desperation, gave in to the pleas of buying bunny rabbits – it was either that or a dog- so we did just that, we adopted two old rabbits from Pets at Home. Crazy.

In terms of health, she felt so much better very quickly into starting Modulen. It was probably just what her gut was crying out for: a rest from digesting food which seemed to be aggravating her. We called it the Modulen effect when she won all her races at Sports Day. I was almost tempted to give it a bash.

This all happened around Easter time and we were going on holiday for a week with my family the day that she was to start Modulen. I’m still in awe as to how she did this. My family are amazing and always thoughtful: we deliberately ate things that week that we knew she wouldn’t mind missing out on. No pizzas and definitely no tuna pasta –  Stella’s fave.

The hardest part was when it came to treats: ice creams, puddings, etc. We had to consider our youngest, who was 4 at the time, as well as our 3 year old nephew. We knew it wouldn’t be fair to have them miss out on eating an ice cream on the beach, but the thought of them happily tucking in and Stella missing out, was really hard. She’s truly amazing though and claimed to be just as a happy with her little mints and chewing gum – which I’m sure anyone would be sick of after a while. Her ability to not moan one bit was quite remarkable and something of which I will always be proud.

Thankfully at night time, when the 3 of them had gone to bed, we “grown ups” made up for the resisting of all treats during the day. We drank lots of wine and ate shed loads of crisps, all while watching Masterchef! That was good. So despite all what was going on, a really lovely and relaxing holiday was had by all.

Going to school with these milkshakes was okay too. She had to drink the shakes within 30 minutes (I think, might’ve been 20?) so she had to drink them in the school office. Not that we didn’t trust her but we were worried that she would get distracted and not drink them within this time frame. She had a routine set up: two milkshakes taken down to school, then handed into the lovely office staff to refrigerate. Stella would nip down to the office at break and at lunch. She found it very cool to be the only one allowed to eat chewing gum at school and drink 7 UP! Wow! It’s amazing that these simple things can make such a difference to a difficult situation being bearable. This went on and really was okay! We had a countdown chart on her wall; halfway point was the random rabbit buying which, as predicted, proved to be a brilliant distraction for the last month (if only they felt the same eagerness for looking after them now). And that was that, 8 weeks of a liquid diet, nailed.

“Well it’s not cancer…but it’s probably Crohn’s Disease.”

These were the words from a phonecall I received at work one day from our GP, a few days after I had sent my daughter’s stool sample in to get tested. I had probably asked for ‘worst case scenario.’

In comparison, obviously, Crohn’s Disease sounded a lot better. I told myself that I could handle Crohn’s Disease, whatever that was? My limited knowledge of Crohn’s was that it was something older people had, had a very limited diet and eventually possibly/ maybe required surgery? I didn’t have a clue. But I knew that, for the first time, I couldn’t Google it. And I love to Google. Except when I do I end up feeling much more anxious. No, this time I was not going to Google, I would just listen to the experts and roll with it. Of course this didn’t last.

This is a blog all about my daughter, Stella, who was diagnosed with Crohn’s, aged 8. It’s from my perspective and what we’ve done as a family to help her to be just fine so far, I think, and live a really normal life. I know too well that as a parent when you’re faced with news like this, when you Google, the grim tales can take over the positive ones. This blog is positive overall, so far. And I would’ve loved to have read about positive stories two years ago.

 

Poo Diary.  What, you mean you don’t have one?

We did know something was up, the subtle signs being: pale cheeks, bit of lethargy, but the two biggies, which we’re now actually ever so grateful for, were the loose stools and the “hip pain.” She had mentioned some pain in her hips on and off years prior but we didn’t really take it too seriously, we were just wondering how on earth a 5 year old knew where her hips were. I remember taking her to the GP for this, but we all just put it down to a muscular thing because there were no other symptoms at that time, and it did come and go. Fast forward a couple of years, and the hip pain was much worse, this combined with the loose stools we knew there was something quite serious going on. To say that we were obsessed with her stools is an understatement. We kept a Poo Diary – that is how we rolled.

It was frustrating to hear things like “this might be normal for her” etc…referring to her ongoing loose stool problem which lasted a good few months. Because she wasn’t losing weight and appeared to have enough energy, the GPs weren’t that concerned. I was really worried. And also slowly turning into the crazy parent who celebrated when the poo was ‘kind of normal?!’ which was a rarity, but still, we celebrated.

Stella does also have a nut allergy and so this loose stool issue being linked to food intolerances seemed to be a reasonable explanation. That’s when Poo Diary was born. Also, excellent excuse for a new notebook.

We limited dairy, gluten, all the usual allergens from her diet, observed the symptoms and noted it all down in the diary. My Granny was Coeliac and so again, thinking she was maybe Coeliac seemed plausible. It took for one of my lovely pals who happens to be a GP to mention to me the words “Faecal Calprotectin test”. This is a marker of inflammation in the large bowel. This is what sealed it for us, and the difference between me thinking that I was making it all up to the eventual diagnosis of Crohn’s Disease. I went back to the GP and asked for this test to be carried out. The GP was very lovely and agreed. Test results came back a week or so later (can’t really remember) and here it was: A result so abnormal that the lab had stopped counting once it reached 1700. To put it into context, a normal Calprotectin in a normal person with no bowel disease is less than 50 (or something like that!) So that was it, confirmed that there was an issue; thank God not Cancer (not that we thought it was) but likely that it would be Crohn’s.

 

Tests galore…

Fast forward a few days we were in hospital where we were met with a very lovely gastroenterologist who reassured us that Stella was the “wellest” looking child he had seen with such a high inflammatory marker. I think this reassured me? He was eager to get her in for an overnight to do some investigations.

Investigations being endoscopy and colonoscopy. So, FYI, and speaking now from experience, don’t lie to your wean about what a colonoscopy involves. THEY FIND OUT ANYWAY! I had decided that Stella would not appreciate being told that she was going to be knocked out and a camera stuck up her bottom. I, in my wisdom, decided to tell her that she’d be put to sleep because a “special machine with a camera would be pressed onto your tummy and you’re put to sleep in case it hurts you.” “Flatten my tummy? Like a big pancake?” She asked. “Yes!” “Exactly that.”

How stupid was I. She discovered this wasn’t exactly the case when one of the nurses ever so pragmatically said “So you know you’ve got Crohn’s, yea? And you know we know this because of the camera that went up your backside!” And that was that. That’s when I realised that I was acting like a complete idiot lying about it and there was just no need. Stella could well handle this, clearly better than me.    

So for the next few weeks there were scopes: colonoscopy and endoscopy; MRI. All pretty horrible. Sleepovers in hospital, despite dressing it up with new jammies and a dressing gown, remained frightening. I think for Stella, if asked, the worse thing would be the cannulation/ needle poking as she called it. Also the fasting for 24 hrs: brutal. Fortunately, a lot has been forgotten, for her, anyway. She had to have a liquid drink to completely empty her stomach contents, prior to the scopes. Definitely the hardest night I’ve experienced to date. But, she, being the most resilient toots ever, can hardly remember it now. What a blessing.

Obviously the next day’s process of escorting your child into the anaesthetic room before surgery was always going to be hard. I had been warned about this part; I was advised by my friend to have my husband do it, except no chance was I letting anyone else do it. I had been there through the whole night and had to see it through. And for me anaesthetists are essentially God like. I have yet to meet one that I haven’t adored/ had complete faith in so if I was going to hand my child over to someone….

That couple of hours or however long was a complete blur actually, I think we just ate our way through it. I had fasted too for 24 hrs alongside Stella so a large latte and croissant felt pretty ace. Sadly alcohol wasn’t permitted.

And that was it, our wee toots woke up and was wheeled through to see us. Groggy, but fine. Turns out a special machine which flattens your tummy like a pancake ain’t so bad.

We waited for the Doctor to explain the findings. Findings being: Confirmed Crohn’s but…no scar tissue which meant that it had been caught early enough. Hurrah! This news of no scar tissue didn’t mean that much at the time but actually became very significant when we had to think about her diet later on.

My background/ disclaimer, of sorts…

I have a background in midwifery as well as infant feeding, but, and I absolutely can’t stress this enough, I know absolute zilcho when it comes to anything bowel disease related or nursing really for that matter. Thankfully there are experts that do and not only have they managed to bring Stella into remission but they have been my right arm at times. The bond you build with these people when you know that they genuinely care as much for your child as you do is really special. They have been Stella’s rock and my rock and we will be forever grateful. The thing is, now that things are okay, there’s no reason really for us to see the specialist nurses, which is obviously great- but we miss them! We see a consultant once every 4 months and Stella has bloods checked 3 monthly. As for the nurses, we know they are always available to chat/email any time but thankfully we haven’t needed this for while now. Touch wood, touch wood….

Anything I write here in this blog related to Stella’s diet and lifestyle is purely what my husband and I have stumbled across ourselves, me with mostly Pinterest, actually, which may not be the best source?! And my husband: his about curing Crohn’s book that he bought and much more sensible internet searching. I am absolutely not saying that Stella is cured of her Crohn’s, far from it, but she is in remission, and has been for over a year now. Apparently Crohn’s can’t be cured but I’m entirely determined to ensure that she has an okay time with it and doesn’t let it stand in her way of doing whatever she wants to do. I know we’ve a long way to go and we’re just at the beginning. I just want to share our story because it started off pretty horrific, it was scary and overwhelming and two years on, we’re all actually okay. I’m a neurotic control freak most of the time, but I’m definitely not blaming Stella for that, I’m fairly certain I’d still be this person if there was no Crohn’s to worry about. Stella, on the other hand, is a happy, confident and bright wee girl who is, I think, frankly nailing life. I am hoping that other parents who have a child with Crohn’s might read this and feel positive too.