Special needs parenting

Ella’s Appendicostomy, and how it’s changed our lives

before we begin, I just want to say that this is in no way medical advice, I just want to share how this procedure went for us, and don’t worry – it has a happy ending!
If you think this might be the answer for you or a loved one, definitely speak to your health care professionals

POOP! Ella has always had problems with constipation. Her entire life she hasn’t been able to have a bowel movement naturally.
I used to get so frustrated when people would ask “have you tired…” yes, yes we’ve tried EVERYTHING!
pear juice, prune juice prunes, more fruit, cutting out dairy, cutting gluten, more fibre, psyllium husk, probiotics, all the laxative and stool softeners under the sun, you name it, we’ve tried it, and she would still need suppositories.

Most recently she was on 10-20 laxative drops and 2 sachets of movicol PER DAY and still would go without a crap for DAYS, and when she finally did, it would be like diarrhoea, all day. also FUN FACT you can still have diarrhoea like poo, and STILL be constipated, as the runny stuff can move around blockages.
I would get calls from the school about her poo at least once a week, I would keep track in a diary how often, how big and how runny, as well as keep track of which laxatives or softeners she’d taken. I once even weighed it (over a KILOGRAM!) safe to say, after 9 bloody years, enough was enough.

I made a call to a GP to get a referral for a gastroenterologist, to try and work out if there was another cause or treatment we could do. because Covid was just beginning then we weren’t able to see one, but instead the GP gave us a referral for a paediatric surgeon that CHANGED OUR FRIGGING LIVES!

I had a zoom meeting with this surgeon, and if I could see her today, I would probably hug her! without much fuss at all, she has single handedly fixed so many of Ella’s issues after 9 years of complaining.

I explained our situation, and she told me about a procedure called an appendicostomy (also known as a MACE procedure or MALONE)
She explained that they take the appendix to create a stoma through the abdomen into the large intestine and through this, I will be able to flush out her bowel daily with saline. She said if i wanted to go ahead with it, She could fit Ella in, in two weeks!! I went away from the meeting and did so much research into it, I read up on google, I watched youtube videos, spoke to Ella’s pediatrician and even spoke to others that have had the procedure done, either themselves or thir kids. after all my research I decided to go through with it!

and boy was I scared! 😬

The surgeon told me in preparation to clear her bowel as much as a could, so for the week leading up to it I upped Ella’s laxatives, and still she didn’t really poo for 10 whole days, just a few small pebbles 😒 which definitely cemented to me that I was making the right choice.

The surgery went off without a hitch, Ella recovered wonderfully and the next day we were ready to push our first lot of saline through – to say I was excited was an understatement!!
I got Ella set up on the toilet with the Ipad, bubbles, songs, balloons and pushed through 500ml of saline. And… nothing. absolutely nothing out the other end. I was assured this was normal, so we tried another 500ml that afternoon… nothing.
The next morning… nothing. πŸ˜’ then They suspected a bit of infection at the site so she was on antibiotics and we were in for another night.
to top it off I couldn’t figure out why Ella was having so many wet nappies!
I even questioned the surgeon on whether they’d connected it to the right spot πŸ˜‚

After some checks we figured out because Ella was so impacted, The saline was just running around a hard blockage, and coming out as clear liquid, OR sitting in her bowel and reabsorbing and coming out as wee, so after a few days of trying to move it with saline and osmolax, we decided to run glycerine through on a continuous pump. From memory it was 4 litres, but thinking that now it seems absurd! so it could have been less and I’m misremembering πŸ€”

By this stage I was over it, Ella was over it, I was questioning whether or not I’d made the right choice, we’d been in hospital for almost a week at this point, when I was only expecting overnight. Because of Covid we couldn’t have visitors so I hadn’t seen my 2 year old or partner the entire time. Not to mention, by this stage it had been almost 3 weeks since Ella had had a good bowel movement – I’ve always suspected her headbanging and bad sleep at night was loosely correlated to constipation, but she was sleeping HORRIBLY! and being that my fold out couch-bed was right next to her – so was I.

But… then, just after midnight, it happened. and oh boy did it happen πŸ’© If I ever see that much shit again in my lifetime I’d be shocked πŸ˜‚ I’ll spare you the details, except to say it was…. bad. and afterwards? Ella slept like a frigging LOG!! The next Morning we tried another flush with saline – and it worked! πŸ₯³ and off home we went later that day.

The story isn’t quite over yet, there were some small trials and tribulations – the chait has been pulled out a few times – but luckily I know how to put it back in now and its relatively easy to do, so not a huge deal.
There’s also been a bit of fiddling with the timing and ‘recipe’ we use for the flushes. Saline still doesn’t quite cut it – so we use glycerol as well. But the glycerol has to go through first otherwise Ella Vomits, which is slightly annoying (but still 100 times better than before!!) And if the flushes go badly? she can be vomiting, as well as diarrhoea for hours 😣
Thankfully that’s only happened a couple of times, usually if she’s too cold during the flush,or feeling uncomfortable – and 8 months later we have it down to a fine art!

After dinner Ella grabs her Ipad and I mix up her saline (using salt and warm water) and measure out the glycerol. Tip it in the bag and let it run through. It takes 45 minutes from start to finish and her bowels are emptied daily! (less time than it takes some husbands to shit 😜)

Not only that, since having the appendicostomy so much else has improved! Ella’s appetite is so much better, and considering how underweight she is, this is AMAZING.
Surprisingly, her behaviour is better too and even her headbanging at night has reduced so her sleeping is so much better!
Ella Having daily bowel movements is improved all our lives in some surprising!
I don’t need to worry about laxatives and stool softeners any more – and even better I don’t need to worry about when the laxatives work, and she has a poo while we’re out and about! no more tracking her bowel movements, how often, and what type.
We can have sleepovers and I don’t need to worry about when Ella has last crapped, or if she’ll do 20 while we’re there.
Ella doesn’t need to worry about pooping at school, or being ‘the stinky kid’, or owrry about other people cleaning her up properly.
After 9 years, I now don’t even remember the last time I had to change a shitty nappy – that in itself is something to be thankful for!
We’re also looking forward to giving toilet training another solid go in summer. Last time, we were out of nappies for 3 years – and not once did a poo make it into the toilet. now? it’s just wee! We’ve got a MUCH better chance, especially since without the pressure on her bladder from constipation, she seems to be holding her wee better!

All in all, even with such a rough start, the appendicostomy was the best thing for Ella. imagine, after 9 years of constipation pains – just being able to have a bowel movement regularly – in the toilet! What a bloody miracle.

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