I’ve been wanting to write this post for a couple of weeks now, but to be honest I think I’m still coming to terms with the reality of it myself. After Thursday the 7th of February, I won’t be able to poo. Well, that’s not entirely true, but I won’t be spending 2 hours a day on the toilet, as I’ll officially have a stoma.
I think everyone has kind of seen this coming, but now that it’s booked and I’ve had time to overthink it all, everything feels very real. Don’t get me wrong, I believe this is the best option for me now. My symptoms are getting worse by the week – the pain, urgency, frequency, blood, nausea, fatigue- to the point where even part-time work is becoming a challenge, and my social life is essentially non-existent. My risk of bowel cancer increases every day it stays in there, increased by the medication I’m on to stop me rejecting my liver. But despite knowing that this is my only realistic choice to have the quality of life I want, it doesn’t do much to calm my anxiety.
Basically, I’ll have 3 operations this year to improve my condition. The first will be to remove the majority of my large bowel and create a stoma (I like to think of this as a belly butt). After some time to heal, the second will remove the remainder and create what’s called a J-Pouch out of my small bowel (I’ll go over this in a little more detail in another post – because who doesn’t love hearing about my guts?). Again, after some time for my body to recover, the third operation will close the stoma, allowing me to poop like a real boy again (…kind of). The goal is to have all of this done within the year.
What this means is I’ll have a bag stuck to my belly which my stoma will empty into. At first, this was by far my biggest fear. The risk of leaks, the whole body image thing, the constant changing
Without going into it too much, the J-Pouch procedure will give me some control back without relying on an external bag. However, I’ll still be going anywhere from 5-8 times a day, can have issues with internal leaks, blockages
Thank you to all the people who’ve been there for me, especially throughout the last 12 months or so. This post-transplant journey has been a little rockier than I expected, but your support has helped immensely. I do have to give a huge shout-out one person inparticular, who has been by my side since the minute I met her. Eden, you’ve pulled me out of some horrible places and no one should have to take care of a partner the way you’ve taken care of me. You’re incredible.
I’m sure I’ll have more updates soon. Thanks for reading!