A Day in the Life of Rachel & Jake

It’s delivery day and still 6 years later I look forward to this day. Even after this long I find it surreal that me and my mini ostomate have all the supplies we need delivered to our door courtesy of the NHS. We are so very lucky, and I never take it for granted.

Today there is no school or work so it’s a day for me and the little man to have some fun together!

The first job of the day is to empty our bags. When I first had my surgery last year I would be strict and not eat past 6pm. Not even drink anything, worrying that my bag would leak or wake me up from needing emptying. Fast forward to now and all the rules have gone out of the window and I have faith that as long as I empty before going to sleep and don’t eat my last meal of the day within a few hours of going to sleep then I’ll be ok. This logic serves me well 90% of the time.

We all have times when the worst happens but when I have been on mop up duty when it happened to my son since a baby it really doesn’t bother me. It is what it is as my Dad says: We all do it and it happens to us all at some point! Once both ostomies have had their visual checks to make sure they are still secure from the previous night’s application we get ready for the day.

After some breakfast the first job is to prepare Jake’s meds which requires some being dissolved in boiled water, some cooled water, all measured for the first of four times a day. These are administered via his feeding tube which he is learning to do himself. A trip to the park with friends teamed with plenty of fluids and a snack takes us to the second dose of medication needing administering. It probably takes all of two minutes to do when prepared in the syringes and done on autopilot. If we are out of the house they are kept in an insulated bag with the connecting tube to be attached to the Mickey button (the name of the device that lives in the stomach wall to create an outlet for medicine to be given directly to the stomach). Back during the early years the enteral feeding nurses would say they are coming to check the stoma and I would say no we have stoma nurses for that. I didn’t realise back then that the word ‘stoma’ is Greek for ‘opening’, so technically Jake has two stomas used for very different reasons!

A bag empty has been necessary by now and being out of the house still we used the public disabled toilets with our trusty radar key. It’s a big bulky key but I don’t go anywhere without it. Nothing worse than needing to attend to your bag in a tiny toilet cubicle outside of home so I avoid it at all costs! This takes us to where it’s the third set of meds for Jake and you can see a pattern here. Each few hours is met with a snack or meal, followed by a bag empty, medicines and then it’s repeated until bedtime.

I have always changed my ostomy appliance daily. It shocked me when I learnt how some people don’t for a few days or even more! I have a very low residing stoma which has needed refashioning once within five weeks of surgery so it’s prone to problems out of my control. Jake has always had a high output stoma so he has the same. We have a routine of changing our bags daily and it works for us.

If you need to change it more or less than others it’s testament to how we are all different and I say embrace it. It starts conversation and as long as you are secure and confident in how long you can get out of your appliance roll with it! Some days I might go rogue and try and get 48 hours out of it and it doesn’t usually end well so I don’t tend to bother anymore. As Jake gets older it will become his responsibility to monitor how often is right for him which may very well be longer than every day which if it is I’ll be thrilled about.

The delivery comes from Respond and I take great delight unpacking everything. I take everything out of as much packaging as possible to save space and recycle everything I can. We collected more recycling boxes for cardboard and plastic when I had my ostomy as with two ostomates in the house the recycling was getting rather a lot during these delivery weeks! Everything is put away in our storage in the garage. I have my trusted crafts trolley with all my equipment laid out that I put a weeks worth of supplies onto. It was my pride and joy preparing for surgery and sits proudly in the main bathroom. Pink of course.

Being in a house of boys I took advantage of needing something for me. I have a bath, sort my own appliance out and then it’s Jake’s turn. I can happily say I forget I have an ostomy most of the time now. When ostomates say there’s nothing better than that fresh bag feeling I don’t relate. Maybe it’s because I change it everyday? Maybe it’s because all I have lived is ostomies since Jake was born. It’s more normal than ‘normal’ is. We benefit from a local hygiene collection which we are also very lucky to have so all waste goes in there and I align all my products back up on the trolley ready for the next day.

Then it’s story time and bed for Jake after his last set of medication and I’m not far behind! I wake up during the night to check on his bag and empty it which is needed every night.

A small price to pay than being greeted by a poonami…and that folks is it!

Until next time, Rach x

@gutsy.mum