I originally started to formulate ideas for this post last weekend when I was feeling pretty low. I had been discharged from hospital and was the reality of everything was hitting home. There were so many things going through my mind that were being amplified by feeling unwell. I was going to compose the post, which would have overall been very negative, but instead I decided to take a step back, wait and try to turn the negatives into positives.
The Reality of it All
The build up was big, I had been battered by Crohn’s for 10 months, my quality of life had deteriorated, I could no longer do some of the things I enjoyed and I had experienced many of the side effects that came with the chronic disease:-
- blood loss
- extreme fatigue
- perianal abscesses (3 surgeries within 10 months)
And to cap it off, the Humira medication which had been my saviour during my last big flare up failed to work. There were still options for medication, although those options were relatively new so didn’t have a proven track record. Surgery at that point seemed the best option and I made up my mind in essentially was a snap decision whilst sat with my decision. I think I had just had enough of Crohn’s and wanted out.
From making the decision to surgery was 5 months so during that time I had plenty of time to reflect on my decision. For the most part I felt I was embarking on the right journey but at the same time I couldn’t help wonder if I was making the correct decision. The reality was that I was choosing to undergo surgery that would change the way my body works. I was choosing surgery that could never be reversed. I struggle to think of any decisions we make in life that can’t be undone. But whenever I thought like that I would try to counteract those thoughts with the good stories I’d read and heard about how life-changing for the better the surgery had been. And whenever I spoke to someone and explained what I was having done and how much better things would be I felt like I was still trying to convince myself that I was doing the right thing. I found this hard mentally.
The ward I was on in hospital specialised in gastrointestinal issues so I encountered a number of people having the same or similar surgery to me but the reason for the surgery was related to some form of bowel cancer. They were having the surgery to save their life. I couldn’t help thinking that I’m there because I chose to be there and whether I had made the right decision.
To further compound matters, my specialist was unsure of how to proceed in terms of medication because ‘there weren’t many people like me out there’ who had Crohn’s in the lower end of the large intestine and had elected to have surgery. Most, he said, just put up with it and continue with medication. Again, had I made the right decision?
It’s interesting how quickly I forgot about everything that I went through over the last 10 months. Overnight, I was ‘cured’ (I know it can come back) from Crohn’s and in the words of my surgeon, ‘Crohn’s Disease had been thrown in the bin!”.
Crohn’s Disease had been thrown in the bin!My Surgeon
In hospital my mind was naturally on other things so it was a little while before it dawned on me that I was no longer having to run to the toilet, I was no longer going multiple times, I no longer was suffering from fever-like symptoms. And over time other things improved such as being able to get a full night’s sleep. This was why I did it. This was why I decided to change the way my body worked. And things can only get better once I can get back to doing things that I used to enjoy.
Changing the Bag
In hospital it didn’t matter when I needed to change the bag as I wasn’t going anywhere but leaving hospital I will have to deal with changing the bag in the house and outside the house.
What I’m currently anxious about is determining when I should change my bag. On a few occasions I’ve changed it shortly after waking up and then no sooner had I changed it some more poop had started to come out. Do I change again or do I leave it for later?
It’s very early days and my bowel is still settling down after the surgery. I’m also learning more about my bowel movements and already I’m tending to go more in the morning and infrequently throughout the rest of the day and never at night. I’ll become more familiar with my bowel patterns over time and learning about the patterns whilst I’m still at home recovering is the best time to do it.
Wherever I go I’m always going to be prepared to change the bag so it’s not an issue if I change the bag, leave the house, and then need to change it again.
I’m used to seeing poop in the pan of the toilet – except for the past 10 months it’s been rather different – so having to see, and smell, your poop up close was something I wasn’t used to. I’m the early days it was a minor issue having to look at the poop and clean up the stoma.
It’s only poop! Within a few days it becomes second nature, the bag is quickly disposed off and there’s usually not much to clean up. And apart from the early days of changing the bag, I haven’t really noticed the smell. Each bag has a piece of charcoal inside which helps neutralise odours and does a pretty good job.
The bag is largely invisible, particularly when empty but when it starts to fill up it does bulge and on one occasion gas filled the bag causing it to balloon. It’s when it started to fill up that it becomes noticeable beneath your clothes.
So far I’ve only been wearing the bag with tracksuit bottoms so I’m not sure how it’s going to be when I wear jeans, mainly because half of the bag is going to be below the tight waistline.
The bag is now part of me and I’m not ashamed of any part of my body so I’m not ashamed to wear the bag. I’ve already shown pictures of me wearing it on this blog so I don’t mind if the bag is on show when out and about. And it it bulges whilst out, so what? I’ll already be prepared to change it so it’s a problem easily solved.
Regarding clothing, there’s more to learn there and that will come with time and experience. And there’s a whole range of covers available for your bag on Etsy which will make it look a bit more interesting should it be on show.