I had part 1 of a 2 part j pouch operation in October 2012. There were many complications and I was in and out of hospital for the next 6 months with abscesses, infections etc. and various other complications. In Ocober 2013 – exactly 52 weeks after the first operation – I had the reversal – I think that was an omen. Immediately afterwards – I felt fine and ate like a pig for 24 hours – then I felt sick. I was discharged 10 days later not feeling that well – and never having eaten another thing. (The main operations were done 250 miles away from home. Two days after discharge I was seeing my local gastro enterologist and didn’t feel at all well – also I was in pain when I sat down – and still couldn’t eat. He ran some blood tests and the following day phoned up – having organized a bed and spoken to the surgeon and arranged a CT Scan. As my CRP Level was very high
Over the following week I had a CT Scan, pouchogram and pouchoscopy. These showed a small hole (still) in the anastamosis between the pouch and anus on the stitching line, an abscess behind this hole (with ‘collection’) in the pelvic cavity, there was a stricture above the pouch some 6 inches in length and the intestine was distended above that. I was observed for a further 12 days – I do know the local surgeon who can perform j pouch operations – but who did not want to perform one on me in the first place as there was a query over whether I had UC or Crohn’s. To cut a long story short I have had the j pouch disconnected and a permanent ileostomy created (though this surgeon said that there was no reason why the surgeons in London could not try to repair the j pouch – though he himself thought it was beyond repair as the hole is too close to the anal sphincter to be exorcised successfully all round (to heal) The hole has been there for a year, but was thought to have healed – hence the closure of the original ileostomy.
At the moment – apart from being devastated that I have gone through all this for nothing – the staff in the hospital in London never ever seemed to listen – in fact – they made a lot up, particularly the nursing staff – change overs were at the end of your bed – and if I heard them – I corrected them – saying ‘eating and drinking normally’ (but doubt that they ever altered their observation to ‘not eating’ when I did correct them.)
I just don’t know what to do now
Over the following week I had a CT Scan, pouchogram and pouchoscopy. These showed a small hole (still) in the anastamosis between the pouch and anus on the stitching line, an abscess behind this hole (with ‘collection’) in the pelvic cavity, there was a stricture above the pouch some 6 inches in length and the intestine was distended above that. I was observed for a further 12 days – I do know the local surgeon who can perform j pouch operations – but who did not want to perform one on me in the first place as there was a query over whether I had UC or Crohn’s. To cut a long story short I have had the j pouch disconnected and a permanent ileostomy created (though this surgeon said that there was no reason why the surgeons in London could not try to repair the j pouch – though he himself thought it was beyond repair as the hole is too close to the anal sphincter to be exorcised successfully all round (to heal) The hole has been there for a year, but was thought to have healed – hence the closure of the original ileostomy.
At the moment – apart from being devastated that I have gone through all this for nothing – the staff in the hospital in London never ever seemed to listen – in fact – they made a lot up, particularly the nursing staff – change overs were at the end of your bed – and if I heard them – I corrected them – saying ‘eating and drinking normally’ (but doubt that they ever altered their observation to ‘not eating’ when I did correct them.)
I just don’t know what to do now