I’ll be honest, day-to-day life for me, 4 years on from surgery sometimes I forget I even have a stoma. I am so used to having one now, these daily routines have just become my “norm”. It’s only when I stop and think about my daily routine that I realise, WOW I put up with a lot of CRAP! (pardon the pun)
There are parts of my routine that most people would be able to cope with and then there are the other ‘forgotten’ parts. Honestly, I think these parts of my daily routine would send a healthy person off the edge.
The day-to-day easy bits
To me, the day-to-day easy bits involve the basic level of self-care. Hydration is so important with an ileostomy, so I keep on top of my hydration levels. Making sure I am maintaining a healthy diet, alongside being aware of what foods are/aren’t stoma friendly. Ensuring I’ve always got spare stoma supplies packed with me wherever I go and keeping on top of my stoma supply order so that I’m never left short. These are like the surface level things that I need to keep ticking over.
The nitty-gritty activities
A bag change, 4 years on – I still hate it.
I find it such a chore. I do not want to see my internal organ, ever, let along every other day. This is my general feelings towards a bag change, the hatred for them grows if my stoma is active. You try to safely apply a stoma bag whilst your stoma is squirting out poop, whenever and wherever it wants. So not only did I have to start the day with a bag change, I also have to deep clean my bathroom, put my pyjamas in the wash (if they are salvageable) and jump in the shower (again). Everyone knows I have to change my stoma bag, but most people have no idea what that entails. Some days, I stand over the toilet for 20 minutes. My morning then starting in a rush, adding stress to the rest of the day. It’s just an added element of living with a stoma.
The wobbles
For me, I can’t believe how my hospital experience has affected me. I truly believe that I have developed health anxiety because of my stoma. So, the wobbly moments come when, on top of having to deal with a stoma, my health dips in other areas. Let me paint the picture for you: last week I managed to get a water infection. No, not only did I poo through a hole in my stomach into a bag, my rectum was having a ulcerative colitis flare and now it’s completely painful to go for a pee. I honestly burst out crying in the doctors surgery. I know UTI’s are common, but because of everything I’d been through, to me it felt huge. Another experience of my body not working, another thing to add to the daily juggle.
The cherry on top of the cake
I truly believe that your average human would not be able to cope with this. There are times when I have woken up covered in my own poop: a TRAUMATIC start to the day. What would you do? Take the day off work? Cry? Give up?
Nope, not us ostomates. Unfortunately, this can sometimes be a common occurrence. We don’t have time to dwell on it. For me, I get up, clean myself up, miss breakfast because I’m now late and head to work. Now, I’m not sharing this to scare anyone or to make anyone feel sorry for me. My content is truthful and real, and honestly sometimes living with a stoma can suck. So be kind to yourself and acknowledge all you put up with and power through!
