Using this platform to raise awareness and share how I care for my little warrior, I thought it best to share how I prepare for a bag change. Since bringing him home after his first stoma was formed, I wanted to be prepared for the worst, and plan for the good, the bad and the ugly. Months followed of multiple bag changes daily (and nightly) with some days going into double figures. My husband was working, we were both barely functioning and the baby was a chronic sleeper. Little did we know then he still would be at the age of 2.5 years old. Jake has a high output ileostomy, and due to the absence of the large colon, the stool is like water in consistency. Being fed via a gastrostomy (stomach tube) with a milk like formula, it wasn’t until we found Ostosorb (see photo to follow) that the huge amount of bag changes a day calmed down. It felt like a never ending treadmill where the only break was to go to the toilet to cry.
I decided to have a tray of my changing kit ready to hand both upstairs and downstairs. One in Jakes bedroom for the nights and one in the living room where the most room was to change him downstairs. The photo above shows my set up today, in a flat lay of course, so you can see clearly everything I use. Realistically, there would just be the tray, PJs and changing mat. What I really wanted to do was lay it all out so you can see it clearly and I can explain exactly what I use and why. So here goes..
1. PJs – always 2 pairs just in case the bag comes away immediately after changing them, in the baby days this would have been baby grows or vests depending on the weather.
2. Biotain foam dressing – used for around the hole where the stomach tube comes out of the stomach. We have had lots of overgrowth of skin with the body recognising there is a hole and trying to close it. This is needed to tame this. It absorbs excess fluids and is changed around 3 times a day.
3. Medicare adhesive remover wipes – small wipes used to remove adhesive off the skin. I use these when removing the base of the stoma bag to help discomfort. I also use it to removed any excess adhesive left from the base removal, to remove the grip locks used to keep the feeding tube in place and to run up and down the feeding tube where sticky residue from the grip locks have been.
4. Cavilon barrier film sticks – these are used to cover the skin before a new stoma bag base is put onto the skin. Complete with vitamin E it helps the skin not become so raw from the constant use of adhesive and the adding and removing of stoma bags. I swear by these! I have tried all sorts of alternatives and nothing has ever come close. Everyone is different though I must stress this.
5 & 7. Dansac base and pouch (two piece – drainable system) – after trying lots of types over the last few years, these have been the most kind to the skin. I still can not get more than 24-36 hours out of a bag, I wish I had a magic wand but so far no wand.. I always have the hole for the stoma to come through the base cut ready. I cut them myself as the stoma can vary in size from day to day. I do it on autopilot these days but at the start I found this so stressful. If this is you, breath and know that it will get easier. I promise.
6. Grip lock dressings – these are plasters that go on the stomach with a Velcro part on top which you can fold back and add the feeding tube to, to keep it in place and close to the body. This helps prevent accidents of pulling and getting caught. I always apply the Cavilon barrier stick on the skin before adding these to the stomach as it leaves the skin red raw and Jake itches like mad without it.
8. Pack of gauze – these are used to mop up the area around the stoma site and any seeping or in the rare occasion, blood where Jake has caught it itching. Using Ostosorb makes the stool go like tiny poo covered fish eggs (disgusting but true..sorry not sorry!) and wet wipes just spread them around. You should see the nurses at the hospital in horror when they haven’t come across its use before, they don’t know what to think! Dry gauze are just perfect for this.
9. Nappies – for the wee in your life. Enough said.
10. Ostosorb – it does what it says on the tin. Here it is below. I use 3 sachets every bag empty/change. I was advised to use only 1 as that should of been enough but it hardly did anything to make the consistency more solidified, so after some experimentation we found 3 to be our magic number.
11. Scissors – for cutting the holes in the base. For safety reasons this tray and it’s counterpart downstairs are kept up high out of little hands reach.
12. Metanium – nappy rash can still occur as we all naturally shed dead cells and waste in very small amounts from the bottom along side stool. Also if the area around the site of the feeding tube becomes irritated, using this for a day clears it up a treat.
13. Hair brush – for keeping them locks tamed.
14. Stoma pouches – these are the corresponding pouches, with us using a two piece system. I also keep more than one at a time in case of multiple accidents when changing the whole bag over. In the tray itself, I keep 5 each of the bases and pouches at a time, and when left with 2 top them back up to 5 so I never run out.
15. Talcon powder – because who doesn’t like baby soft dry skin?
16. Nappy sacks – I double bag mine. Who wants poo on their carpet? I don’t!
17. Nappy sacks ready for bag change
18. Aloe Vera wipes – complimentary wipes from Respond Ltd our prescription provider. They are so soft and kind to the skin. I highly recommend them.
The tray sits nicely on our Ikea baby changing table which we never used the changing table fold out part as I didn’t feel comfortable using it. It felt safer changing Jake on a bigger solid surface with so much needed at each change needed in easy reach. It is great for storing nappies along the top and all the essentials we use daily. Every couple of days I give the tray a clean and check the tray is stocked up and replenish where needed. I do the same with the box I use for the same function downstairs. We have the Billy bookcase and use the standard Ikea open toped boxes and find they are great for keeping supplies in, high up away from wondering hands. I hope this blog gives you an idea of how we run things around here. If there is anything else in particular you would like to know, please send a message and I will reply ASAP.
Thank you for reading. Rachel x