One thing I learnt whilst I battled to save my jpouch for two years was how much the colorectal medical profession still has to discover about jpouch complications.
The problem with my jpouch was quite rare, it wasn’t something common such as pouchitis or a stricture for instance, but rather what I can only describe as constipation like symptoms that prevented me from fully emptying my jpouch. (Cool bowel issues to deal with, hey).
This seemed to baffle even the highest qualified colorectal consultants I saw, as most jpouch issues tend to be connected with excessive toilet trips, as opposed to not enough.
When I first experienced my symptoms I was adamant I would do everything I could to save my jpouch, which led to me travelling the length of the country meeting various medical professionals.
One plausible explanation I was given was that it could be an issue with tight bum muscles (the sphincter and puborectalis to be precise), and so I underwent all sorts of weird and wonderful treatment and I mean ALL SORTS.
To give you a bit of insight into these rather ‘unique’ treatments:
- Botox injections in my bum (under general anaesthetic) to try and relax my puborectalis and sphincter muscles
- Biofeedback therapy which involved 6 weeks of mild electrical stimulation of my bum muscles to try and re-coordinate their movements
- Using a catheter to try and empty my jpouch
- And perhaps the most dignity-defying (and painful) of all – internal massage of my puborectalis muscle via my back passage. This was carried out at St Mark’s Hospital by one of the top biofeedback therapists in the country, but it sure did hurt. I’ll put that down as a life experience:)
Yep….so as you can see I tried ALL SORTS. And looking back some of the treatment does seem pretty basic in this day and age, which I think goes to show the knowledge vacuum that exists around this type of jpouch complication.
After two years of persevering with this ‘conservative’ treatment failure it was eventually agreed that I would undergo major surgical reconstruction of my jpouch.
X-rays showed that I had something called a long efferent limb (which is the join between the jpouch and the anus) and the surgeon told me that if this was removed then there was a high probability it would improve my emptying issues. So I thought ‘let’s give it a shot’ as I really wanted to try and keep my jpouch and I put my faith in the surgeon.
I knew this was the last roll of the dice to try and fix it, but as soon as I woke up from surgery I had a feeling that it hadn’t worked out. And sure enough six months later there were no improvements whatsoever. The constipation like symptoms continued.
I could have perhaps tried to tolerate these issues and keep my jpouch, but it was really holding me back and so I decided having an ostomy would be the best bet.
Looking back, I think my jpouch issues had nothing to do with my bum muscles or long efferent limb – basically it is a mystery that I am now philosophical about. One explanation I was even given is that because I am tall this can lead to issues with jpouches! I just hope understanding and treatment for bowel disease can continue to improve in the coming decade as there is still so much to discover.
Two years battling to save my jpouch was long enough, but I have no regrets trying to salvage it. Although part of me does think it was a waste of time, in hindsight . But I’m now three weeks post ostomy surgery, doing well, and looking forward to being able to get back to living an active lifestyle (bike rides and squash in particular!). So for me, having an ostomy is a good thing which I am grateful for.
6 thoughts on “Putting up a good but futile fight to save my jpouch”
I had my my surgery 18 months ago and in the past since months have been having a lot of anal pain. Surgeon said has never seen this and hasn’t been able to help so far.
Hey I’m in same boat as you they have just given me the medina catheter at St Marks and I’m having same issues as you with my j pouch, I had mine done in 2005 and having issues with pouchitos and failing to empty
Hi John, I hope you manage to sort out your jpouch problems. I went to St Marks too for biofeedback therapy. I found the catheters helped a little but they’re not great are they and it’s not like you can carry a 30cm long one around in your back pocket! It was too much of a hassle, not very effective and not a long term answer in my eyes. Do you know if your pouchitis is connected to the emptying issues?
I’m on an 18 month journey to save my K pouch that I’ve had for 36 years. My surgeon is baffled. It is so frustrating.
What is the issue with your k pouch if you don’t mind me asking? I find them quite intriguing as I’ve heard when they work properly they can be very good.
With you all the way my boy Tom – always have been – brave man – we are on top of it – keep on- so proud of your courage and quiet dignity and no fuss attitude – mum x