The day to day of someone with a stoma is not the easiest (speaking only from personal experience of course). Everyday tends to bring some challenge for me. They vary from time to time, I don’t get many new things happening after 8 years in this state but sometimes it springs a wee surprise (I got hospitalised last week because I got shit faced and ate a load of macaroons, coconut is my kryptonite).
For myself, suffering from anxiety and all, I get incredibly paranoid about it. I don’t usually worry about people seeing it or anything like that but there are many things that go through my subconscious and all of a sudden BOOM I start thinking. Then I can’t take my hand of it, checking for gaps, making sure everything’s secure and in place, and I will continue to do this for hours on end. It can get really frustrating because I have no way of stopping myself, it’s compulsive now.
I myself have a few things that not all people with an ileostomy/colostomy will have. For instance, last year I found out the constantly red, painful and often bloody area around my stoma is non-healing dermatitis, and it isn’t normal. I’ve pretty much had it since day one and thought it was. This causes problems. My skin can get very dry, and at the beginning it made finding the right appliance for me was a nightmare. The adhesives wouldn’t stick to my skin. Eventually we found one that worked but that didn’t end the ballsing about. To this day, I have issues with gaps in the adhesive, it coming loose for no reason or every now and again an explosion of poo all over my clothes. This tends to happen in public alot more than I want.
Then once there’s a gap, everyone knows. The smell is atrocious, I’m like a walking sewage treatment plant that dumps about 3 stages too early. I’ve been told I need to carry about a hazardous materials sign and put it on toilets after I use it. I have made myself vomit it’s that bad. I no longer enjoy my own brand like any other normal human being and this saddens me.
It’s such a horrible feeling having the chance of these things happening hanging over me all the time. It happened the other day when I was tying my laces for fuck sake. I had to change and get my ma to tie them for me like a Toddler.
When it happens in front of people (normally my friends) I get so uncontrollably ashamed and embarrassed. It one year put a major dampner on our NYE celebrations, as my baseplate came loose and it exploded. I was drunk and emotional and started to cry out of shame in front of a large amount of my friends. They all rallied around, saying it didn’t bother them and I’d be ok, but it bothered me. At times it makes you feel like a child with an uncontrollable bowel. Even though I have no conscious control over it, I still find myself blaming myself for it happening.
Then there’s sleep. I used to sleep on my stomach, NOT ANYMORE FUCKO! Thankfully, my body has trained itself to wake a few times a night for the bathroom, but quite often it doesn’t wake me early enough the useless bastard. Nothing like waking up at 5am covered in your own shit. I have to shower, clean my sheets, clean my bed and change my sheets. Then I can’t sleep again because I think I have to stay awake to make sure my bag sticks properly. When I was working full time it was horrible when this happened, it made my next day absolutely horrible. To be fair if it happens now it tends to make my next day horrible too.
AND THEN I still have digestive issues. I wake up every morning severely dehydrated, so essentially with a hang over. Like alcoholism without the benefit of getting shit faced. I also get cramps and suffer serious bouts of severe nausea. But the WEIRDEST thing of all is the phantom shit urge. Yes, every now and again, my body hits me with that feeling I knew all too well pre-colectomy. I feel like I’m busting to drop a deuce but (obviously) I can’t. IT FREAKS ME OUT. Ghost poo.
These are the most common things, there are many MANY others things that spring up now and again. It can at times make my life an absolute misery. With my mental disposition, no matter how hard I try not to let it get to me, it does. It probably always will. Being in pain everyday doesn’t help, but I’m trying to come to terms with it. I actually talk about the bad stuff now. My Counsellor is really helping me come to terms with it. Hopefully, even though my physical situation will never get better, the mental one will. Hopefully.