Having experienced life with both a jpouch and an ostomy, nearly eight years later I have realised that depending on what either of them throw at you along the way, it is fine to reverse your opinion about which you think is best.
Of course, some people never hit a bump in the road and are able to go through the rest of their life in a linear direction perfectly content with their jpouch or ostomy, without having to consider more surgery. But what about those of us who are having to contemplate the prospect of more surgery?
This is something I’ve had to think about, due to a poor performing jpouch, and so for me I’ve accepted that it’s not as simple as saying a jpouch is better, or an ostomy is better – as both obviously have their pros and cons. Instead, I think I’ve come to realise the need to be flexible and consider which specific pros and cons matter most depending on what stage of life, and bowel health, you are at. I’m now 35 and my views are very different to when I first fell ill with UC when I was 27.
I’ve learned that regardless of whether you currently have a jpouch or an ostomy it’s how well it’s working for you right now – and how you are coping with it – that will decide whether you stick with what you’ve got, or opt to ‘swap’.
It’s fair to say age, marital status, family aspirations and lifestyle all also really matter if you reach that cross road when you need to seriously think about a moving to a stoma or jpouch to improve the quality of your life.
Going back to the start of my IBD journey, I had to have an emergency Total Colectomy when I was a (single) 27 year-old. Back then, I was very adamant that I wanted a jpouch and didn’t think twice about going through the three-stage surgical procedure to achieve it. As it turned out, I ended up having around six very good years with a jpouch where I was able to live life to the full, move to London, play sports, get fitter than I’d ever been even with a colon, and generally it became my new normal.
But fast forward to today, and I am now just as adamant that I want an ostomy, due to the performance of my jpouch being crap for the last two years! My full circle attitude change is why I believe it really does depend on where you are at in your journey as you never know, you might be forced to re-evaluate which solution is best for you.
When I was 27, it’s not that I was unable to deal with the prospect of living with an ostomy that made me opt for a jpouch. Instead, it was down to my particular circumstances, which involved falling ill with chronic UC in a matter of weeks and wholeheartedly believing that a jpouch was less extreme and more socially acceptable, so was worth pursuing.
But even during my ‘golden jpouch era’, I wasn’t blind to the fact that a pouch also had a few pretty annoying features. After all, it is not perfect. The one feature I found harder to deal with more than anything was the noise it made – embarrassing bowel gurgles at massively inappropriate times (like in a quiet cinema or office) and the truly explosive noise it made when visiting the toilet.
You could say I developed a kind of noise phobia that made me very self-conscious, to the point where I would concoct intricate coping strategies that only those who have been in the same situation can possibly understand.
Yet, I must be honest with you that even despite these jpouch drawbacks I was still overall happy with it and certainly not thinking about an ostomy. However, that blissful ignorance suddenly started to fade in December 2015, when out of the blue my jpouch started to fail on me after around six years of smooth service.
This led me down the road to a major jpouch reconstruction surgery last year, as I decided I was determined to try and rescue it. But sadly for me this failed to fix my issues and I’m now waiting on permanent ostomy surgery to once and for all fix my shit. I could battle on with the jpouch, but I don’t want to.
A cynic might think that I’m only writing about the pros of an ostomy because I have little choice, but I can honestly say that that whilst I recovered from the invasive jpouch reconstruction surgery – with a temporary loop ileostomy in place – I realised there are some undoubted perks stoma life offers.
So, even when I was looking to rescue my pouch I realised that a stoma does have some advantages that should not be underestimated.
During this spell when I was reacquainted with a bag, I realised that the elimination of loud bowel noises was a real plus point for me. This gave me more peace of mind as it was no longer an issue constantly praying in the back of my head. Plus, toilet visits were much quicker and easier as my ostomy was actually more, not less, discreet…To sum it up I would say I suddenly felt a little bit more free with an ostomy!
This is why I know, at 35, I will be fine with an ostomy for the rest of my life and, you never know, it might turn out for the best. Perhaps it was meant to be. One things for sure, it has to be better than the rubbish two years I’ve spent trying valiantly, but ultimately failing, to fix my jpouch.
I know the ostomy will bring challenges such as the odd leak and beach body image to contend with, but these are things I know I can deal with as I have never been anti-ostomy, even when life was going so well with my jpouch. I knew I could live with either if I had to, and never thought a jpouch was superior.
These roller coaster experiences I’ve had over the past two years have made me realise that it really is as much a mental journey with a jpouch or ostomy, as much as it is a physical challenge. After a tough time battling with my jpouch I am now looking forward to living life to the full once more and being in good health with my ostomy, back pursing the active lifestyle I have had to put on hold.
What do you think is best for you and your circumstances – a jpouch or ostomy?
…Thanks for reading. I’m planning to share much more (hopefully original) content about ostomy and jpouch life that will reveal more background about me and my journey with no colon!