My army of doctors are amazing. I’m looked after by a surgeon and all the minions who follow him; as well as specialist stoma nurses and a gastroenterologist. But hindsight is a wonderful thing, and there have been a few details I feel I wasn’t properly informed on. This isn’t to say my troop of doctors and nurses across three hospitals aren’t incredible; I just want to highlight the things I wish I was more prepared for. This blog continues the debate from my previous post about fertility, pregnancy, IBD and surgery [see it here] and I hope others will be able to ask the questions I raise in these pieces I didn’t get the opportunity to.
Looking back, I wish I’d known more about the intensity of IBD treatment. I didn’t fully understand how my body would react to the cocktail of meds they were giving me. I wasn’t prepared for my hair to fall out or the burning acne. I didn’t know my medication could leave me with such severe joint pain, or the long term implications of steroids. I have a scar on my leg; the remnants of a cut that got infected and ended up looking like a mouldy blueberry; a reminder of the immunosuppressants and how they left me with a compromised immune system. I remember asking my GI about all these side effects, and he just said “there’s nothing you can do other than be patient”. This was both infuriating and upsetting; mostly because I didn’t expect the solution to be added to my problems. Medication side effects are different for everyone, but I was unaware of how aggressive my medication would be on the rest of my body.
With my surgery, there have been a few details I wish I knew more about. FYI, pre and post surgical complications are different for everyone; this is just my experience.
Seconds away from having my colon removed, my surgeon came to me and said “your colon is so inflamed, I need to do another procedure. You will have something called a mucous fistula and you’ll need a second bag”. Being in a pre-surgical state, I didn’t fully understand what they were doing to me, and all I remember hearing was “you’ll need a second bag”. Safe to say I wasn’t all that pleased or prepared. But coming out of hospital I learnt, a mucous fistula is a surgical scar the size of my finger nail. It sits on my knicker line, and it produces mucusy-blood type stuff; similar to the gunk that comes your butt when you have a rectum, but no colon attached (Sorry for anyone who’s squeamish…). In less medical terms it’s the top of my rectum… Yes, you heard that right; the top of my butt pokes through my front…
This is done in an emergency (so I’m told) and was to help my recovery process. In the beginning I needed a small ostomy bag to cover it, but as time has gone on it produces less and starts to shrink in size. It may, or may not close on its own. If it doesn’t close up, I have the option to go into hospital for a procedure to close it. Right now, I wear a padded plaster (or stoma cap) to protect it and catch any gross butt-stuff coming out of it. I’ve had to learn to deal with this on my own, and even over a year post-op it’s one of the most difficult parts of stoma living; it leaks all the time and I’m very paranoid about it. If it hadn’t been thrust upon me at the last minute, and I’d known more about it before my surgery, I would’ve been able to adjust to it much better.
Onto post surgical complications, and within the first month after coming out of hospital I got a succession of bag leaks. I wasn’t cutting the bags correctly due to inexperience, and the fear of looking at my naked stoma. This resulted in the skin underneath my stoma being eroded, and I had a one inch hole (width and depth) directly underneath. Poo is notoriously acidic and when it sits on the skin for long periods of time, it burns. This made the process of bag changing excruciatingly painful, and I went through a lot of pain for around three days until I could get help from my nurses. They gave me stoma rings to pop over the gaping hole, as well as powder; both products I knew nothing about. There are a lot of accessories to go with a stoma bag and my nurses didn’t tell me about them until I needed them; which I feel is too late. I had to find out about other ways of helping irritated peristomal skin through social media or endless Googling.
So… I’ve done a guide [below] of the accessories I know about for you to copy, ad to and share!
Pooing into a bag effects my lifestyle in ways I didn’t expect; even over a year post-op. I didn’t get the chance to ask these questions but I hope this helps someone to raise these issues with their doctors, and ask these really important questions.
IBD and stoma’s impact far more than just your poo.