Friday, January 12 2018
NB: This post contains talk about poop
You always remember your first time doing a milestone. Well today I am celebrating the first time I showered without my bag on and boy I felt like a rockstar afterwards as though doing something mundane but great.... If you know what I mean.
There have been times where I have had a really bad bag leak, I'm not talking about a little seepage from under the wafer, I am talking a leak of cataclysmic proportions like a volcanic erruption or a poosplosion (the latter is real, trust me). My clothes, my linen and my mattress protector needed to be washed and soaked with napisan.
Then there was me, not only were the clothes I was wearing drenched, but so was I.
You know when you go to the beach once but for the next month you find sand everywhere and it gets into every nook and cranny? Well, that is how it is for me when I have a bag leak of epic proportions, except switch out sand for poo and you've got yourself a winner.
So in times of a cataclysmic bag leak it is best to just get in the shower and be hosed off and clean up the mess later.
I have always been hesitant though at jumping into the shower without a bag on, normally I would clean my self up the best that I could while sitting on the toilet and once a new bag is on I would then jump into the shower. Which often meant changing my bag afterwards.
I know what you're thinking, but WHHHHHHYYYYYY?
Well, it was simple....
I was scared.
I have never, in 5 years, showered without a bag on.
I know many do and many have many times, but I was always hesitant.
One of my fears, with my first stoma (May 2013-feb 2016), was because essentially your bowel is stitched to the outside of your abdomen I was worried about the run off from my shower gel or shampoo/conditioner would affect my stoma or cause irritations that might leave me presenting to the emergency department explaining my issue and people think I am silly for not knowing better. It really used to play on my mind.
So I never did try with my old stoma.
Then this new stoma (feb 2016 to now) is a total pain in the ass, it is retracted and sits under my skin, essentially I poop out of a belly button looking hole. So because of this I was always worried that the run off or chemicals would get inside into my small bowel and cause issues, because, well, soap and shampoo/conditioner shouldn't naturally be in your small bowel... so I worried it was just a recipe for disaster.
But with both stomas I was also worried about the mess side of things, like what if it were active during my shower, what if it were active while I was drying myself and would have to shower again and the circle would go on, and on, and on. I also can't bend over or get down to clean, so I was worried about leaving another chore for Russ to do, so I feel enough a burden when my bag leaks this badly and he has to help clean me up.
So back to my story.
I was in bed asleep all day and woke around 6pm to find my bag leaked, I called for Russ to help me as it was too much for me to manage to clean on my own.
Each time it is this bad he always says "just jump in the shower and hose it off", but every time I say "uhh, no it's okay I will figure it out".
Except yesterday I really had no energy and said "what the heck".
I took my bag off and disposed of it, that way I could clean my stomach better and easier.
I had my first shower without my bag on, it was nice to have water running directly on my belly as opposed to wet towelling and washers. It was nice. I have a handheld shower head which has different notches you can turn it to for different settings, so I put on the more gentle of the settings and didn't hurt.
I was worried about the repurcussions of an active stoma.... but to my surprise there wasn't any disasters. My stoma had probably expelled everything it had stored in there (daily I have bowel blockages due to tumour issues) so sometimes it works all of a sudden and leads to poosplosions like this.
Now I know next time when I should just jump in the shower and hose off that it will be okay, that I won't die because my soap chemicals burned an ulcer through my small bowel or that showering with my bag off won't damage my skin if anything it helped it.
Thankfully it isn't everyday that I wake up with a leak like this, some days it is more managable, but it is uncommon to have a day where I don't wake with a leak. There have been a couple of times when a leak like this happened during the day when I was out (once at a wedding and once at a restaurant), so in those moments I can't just hose myself off.
Have you tried showering without your bag? Were there worries you had too?
I know my worries might have seemed over the top, but I live with bad anxiety and that anxiety rules a large part of my life and very quickly my mind can esculate a situation.
I am used to bag leaks now, but it took a while to not be flustered. At first I would cry every time my stoma leaked and I would be so flustured and overwhelmed, so much that my husband would step in and help me. He always was the calm one. I used to play songs or music when I did a bag change to help distract me. When I got my new stoma and it leaked almost hourly I basically had an ipad set up and would watch something funny to distract me, the steps involved in doing a bag change took almost an hour each time and it just helped the time to pass by being distracted.
Now when it leaks, I am just so focussed on getting a bag back on as quick as I can because sometimes it can take a long time to stop being active long enough to whack the bag on.
If you have a frequent leaking stoma, welcome to the club.
But be sure to see your stoma nurse about why you have a leak and what you can do to prevent it, I know not all leaks can be prevented but sometimes there could be a new or better product for you to try.
With my first stoma I was have regular leaks every few days, I realised that my output was getting under my base plate, so my STN gave me rings/seals to try and it really helped improve the longevity of my bags and I was able to go 7-10 days between changes and my skin was still good... I do miss my old stoma, and it is important to note what worked for me in that situation might not work the same for you.
Of course there isn't anything to be done about this current stoma, and it could be the same for you, but sometimes your nurse or surgeon can help.