I have ostomy surgery ‘coming soon’ due to jpouch failure and so I’d like to share with you how a dodgy jpouch can make life tricky. As my misbehaving jpouch, despite my best efforts, has been a literal pain in the arse for the past two years.
For those that read my first article, I have nothing against a jpouch – far from it – as I know first-hand that when they function correctly you can live life to the max, especially with a positive mindset.
But I have to confess that having struggled for a good amount of time with a poor functioning jpouch, I would much rather have an ostomy again.
It’s an inability to empty my pouch properly that caused me all my woes and to this day, after countless examinations, MRIs, EUAs, X-rays, proctograms and even major reconstruction surgery, the finest NHS colorectal consultants still cannot pinpoint the root cause, or fix, my emptying enigma.
So I now have gracefully accepted that after over five years of my jpouch working great, its reached that moment where it’s time to call it quits and move on. ‘C’est la vie’ as they say and I am cool with this.
The nature of my jpouch problems are not meant to put people off electing for this surgery or take anything away from those that have, it’s just to highlight one of the numerous risks that can and do occur.
My emptying issues I thought might be to do with tight sphincter muscles, a stricture or long rectal cuff, but all of these possible causes have been ruled out so it will remain a mystery.
The symptoms I have are a bit like having constipation all day I guess, as I can never empty my pouch fully. This can cause discomfort and fatigue, but mainly it’s a feeling of being full all the time.
It is a pretty rare jpouch complication and may not sound like a big deal, some might say, especially compared to the flip side of an incontinent jpouch. But mentally it has been a big challenge, as it’s been incredibly frustrating that even with an urge to go I just cannot fully empty my pouch anymore when I visit the toilet. Hardly anything comes out. As a consequence, I’d be lying if I didn’t say that this has caused a mix of worry, despair and irritability that has got the better of me at times.
But I don’t want to be too hard on myself, as there is a very intimate connection between the gut and the brain, which I can certainly vouch for. My jpouch problems have had a psychological impact that is just to be expected I think as I am not a machine!
These trials and tribulations with my jpouch have obviously had a knock-on effect on the quality of my life during these past two years, although perhaps not visible or very noticeable as I am good at hiding things and am able to crack on with life. To use a car analogy though, I’d say life has slipped into third or maybe even second gear at times as I have had to slow things like exercise and general fun activities right down. However, on the bright side I know with an ostomy I can get back to fifth gear and start living life to the full again, so I am very positive about my future.
Based on these personal experiences, I think it’s fair to say that although jpouch surgery is amazing with a very much proven track record, it nevertheless is a more risky procedure than an ostomy. Afterall, it has not yet reached the stage where it is an exact science.
Having met several colorectal consultants I have realised that there are a lot of knowledge gaps still around jpouches, particularly around how to deal with jpouch complications such as pouchitis, cuffitis, fistulas, sinus’ and strictures.
And, as I sort of knew when I signed up to a jpouch, I think it’s fair to say that most jpouches also come with a unknown shelf life before they start to deteriorate and cause problems. Not many people keep them working great beyond 20 years.
But all things considered, I do not regret trying salvage surgery to rescue my jpouch as when it works as planned it is a good solution, all things considered.
After six months of my new pouch struggling with my emptying symptoms, I am ready and rearing to embrace stoma life and get back to living life to the full.
Thanks for reading. If you’ve experienced an issue with your jpouch or would just like to chip into this discussion, please get involved below! Your input is what it’s all about.