So, knowing I was going to be in town today for a dental check up, I decided to do some writing in a local coffee shop. Got a loyalty freebie so I was all set.
But my stoma had other plans. I was just finishing up my coffee and got my notebook out, and pain shoots through my bag. My stoma is working overtime to push something through; last nights dinner. Of course, we had chill. With beans in it. Corn chips on the side. I hardly drank yesterday when I think about it too, so just absolutely shit situation. I feel the leak coming on; infiltrating the seal of my bag and I can see the change in colour too. QUICK TO A DISABLED TOILET.
I get in there, output coming out as soon as I break the seal of my bag with the adhesive removal spray. But I change my bag quickly and carefully, as to not irritate my skin anymore, and come out to have a drink. I’m shaking. Situations like this – my first bag leak and change outside of my house – are abit mentally draining. First time for everything and all that, it scares me when my stoma just takes away my control of everything. I was doing so well for the past few days. I was hydrating and eating well but then it all went to pot. I am a bad stoma patient. I should know better.
But its all a learning curve right?
Added to my bag issues, I also need a filling redoing next week. Fab. Fantastic. Just brilliant!
No, seriously, how? Maybe the question should be ‘CAN I hate something that has saved my life?” or even “Can I hate something that has CHANGED my life?” Because, I can hate the fact that my disease was so bad, they had no other option than to remove my colon and give me my ileostomy. I can hate that fact until the cows come home, it still doesn’t change what happened. Does hating my ostomy make it easier to accept? Does this just make me negative and unable to live with it? I have no choice but to live with […]
Following my subtotal colectomy in August; my IBD team recommended returning to Vedolizumab. I had already tried Vedolizumab; receiving the three loading infusions last winter. This is where I was and how I was feeling as 2015 turned into 2016: “… So, it hasn’t gotten any worse, but the past year’s drug choices haven’t made it any better. I’m on a plato; and its going down, albeit slowly, over time. For me, the past 10 months haven’t been brilliant. They haven’t been the worse either, but I’ve noticed a definitely decrease in how well I feel in general, an increase […]
It’s not unusual to spend time at the hospital for back to back appointments. But when they happen at different hospitals, it gets abit more complicated. We spent the morning travelling across the city to Queen Elizabeth Hospital (QE) for my liver check-up. I’ve been attending this particular clinic for almost three years since some routine blood tests revealed very high liver function results. Given my complicated IBD history, I’ve been seeing the head of the department, a Professor; and had lots more blood work done and specialised testing to give me a diagnosis. Not that I’ve ever needed one; […]
“Time moves slowly but passes quickly.” That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering from surgery. Mention-worthy moments: Not needing any pain relief since being discharge. Being able to manage my stoma – when its changed size and the output has changed consistency. Even […]
Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]
Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]