Skip to main content

Leaking bag and shower rant

It's 5.30am and I'm wide awake but exhausted. 

I've just got back into bed after having to sort out a bag leak.

I must have been in a deep sleep cause usually if I get a leak I will wake up before it gets too bad but this one had lifted the base plate of the stoma bag, covered my knickers and pad and soaked right through my pj bottoms. The only good thing is that it didn't go on the bedding otherwise I would be changing all that too. 

One of the large bowels job is to absorb water from stool. Not having one means that my output (another word for poo) is much more liquidy as a result. 

So when your bag leaks it means that you can end up covered, and I mean COVERED, in shit. 

The other problem is that being hooked up to my TPN with its pump and rucksack I can't have a shower to get clean so I had to have a Glastonbury shower instead... a good strip wash using a packet of baby wipes!

Times like this do really piss me off. The simple act that most people take for granted of having a shower is something that I have to meticulously plan. Having a shower means that:

1) I have to change my stoma bag which can take anything from 5 minutes to goodness knows how long depending on how recently I've eaten and drank. If I've not long eaten then stool can be pouring out (imagine when a baby boy wees when the nappy is off and you will get the  picture) and then trying to change the bag is impossible. My all time record is 2 hours! Maybe I could get into the Guinness book of records?? 

2) I have to change the dressing that covers my Hickman line. This has to be done in a sterile way so it involves laying out a sterile table to clean and redress the line. 

3) My hair is falling out something terrible at the moment, something the doctors think may be due to either the medication, a vitamin deficiency due to not being able to absorb things properly at the moment or the trauma of being so poorly for so long on my body. So if I wash my hair I end up with handfuls of hair, the plug hole completely blocked and me wondering if I will need to call my friend who has recently finished chemo treatment for breast cancer and ask if I can borrow her wig now that she's no longer using it!

All of the above means that having a 'quick' shower can take anything from 30 minutes to a good few hours. 

Sorry, I'm feeling a little bit sorry for myself. Every now and again it just gets too much and I wish I could just go to bed for the night without having to deal with all if this. 

Now I've got that all off my chest I will try and get another hour or 2 of sleep before the kids wake up. Only problem is that hubby is snoring away oblivious to me being up and the chances of me getting any more sleep are slim to say the least. 

I sense an afternoon nap later. 

NB x

Comments

Popular posts from this blog

New car smell

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day!  Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40.  To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works.  I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...

The germs have got me 🦠

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold.  ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days!  I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...

Disability benefits cuts

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit.  As someone who is receipt of both PIP and ESA disability benefits I find this whole situation…  🔲 terrifying  🔲 baffling  🔲 rage inducing  🔲 disgusting  🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own!  Now I do b...