CF Nappies Decoded 🙈🧐💩

Warning: Us CF mamas get very used to talking about 💩 and mucus! 😆

Who said being a CF mama wasn’t super glamorous?! Mucus and poo? What’s not to love!

The last 3 weeks Arlo’s bowel movements have been a little...odd. Having been a super consistent little guy, suddenly we’ve been wavering between constipation, and then greasy, and then mucousy, and then normal, and back to blocked up!

I’d been trying to play Sherlock, and work out what it all meant and what we needed to do. Arlo is pancreatic insufficient so has been on enzymes (creon) since he was 4 weeks old but this is the first time we have had to try and decipher his poos for a long time. I tried it all - increase creon, reduce creon, more water, more fibre… the list goes on and we still weren’t getting it right or getting any consistency.

Today I had a chat with Arlo’s dietician about the different types of nappies Arlo has been producing and what they each mean - and I found it MEGA useful.

So for all the other CF parents out there I wondered if it might be helpful for me to share - especially as this is something that I am sharing with our nursery to help them read what’s going on with Arlo based on the nappies he producing.

Constipation - Unlikely to be caused by too much creon. Possibly related to external factors - e.g. the fact that Arlo is now having much less breast milk, the fact that he has started nursery etc. Give a couple more weeks to settle. Try and use natural methods (water and fibre) to clear. If he is still getting constipated for a prolonged time then tell Arlo’s paediatrician as there are medications (laxatives) that can be given both short term and long term.

Mucousy nappies - This is where the poo looks good at first glance but is stringy if you move the nappy and manipulate the poo. This is not (necessarily) a sign of the creon not working. People with CF have a lot more mucus in their bodies anyway. Sometimes this mucus comes out the ‘top end’ (when Arlo coughs) and if not then it comes out the ‘bottom end’. If these mucousy nappies are regular and consistent for more than 5 days then it may be worth flagging with Arlo’s paediatrician.

Fatty nappies - This is when the poo is usually a mustard yellow colour. It is really incredibly smelly. And it almost leaves an oily, grease mark on the nappy. This is when the creon is not working. This is when it’s worth talking to your child’s dietician and assessing whether the creon dosage may need to increase.

We now have a short term plan and I am feeling much more in control and prepared to get Arlo back to being Mr Regular.

And now I am off to do some more prep for my return to work - going from chatting about mucus and poo, to talking about zero trust security and modernising SecOps - all in a day's work eh?!