Around 6 weeks ago I entered Oxford Churchill Hospital to have my Kock pouch formed by the so called renowned Professor Mortensen. After a year of driving hours to 10 minute late appointments and constantly being told to think about it I got what I wanted and had my date.
The date of my arrival I wasn’t greeted by the professor himself which you think being a very rare operation in England you would want the confidence and reassurance by the man himself instead his right hand man Shakeal who constantly tried to change my mind followed by the constant nag of having my rectum out aswel whilst I hadn’t had any sperm taken and only being 19 felt hesitant about (also every meeting I’ve said no), they seemed very rude when I said no to this, somehow making me sound stupid.
I woke up few hours later with my Kock pouch formed with the professor finally showing his face said the pouch and valve looked good.
Weeks past and the cath remained in my valve because the team insisted due to the constant leakage around the sides of the catheter.
2 weeks went past and it was still happening along with massive separation where the stoma was.
They took the catheter out although I insisted I new that the valve had not worked, as I walked into the garden of the hospital a massive burst came from my stoma, it went everywhere.
I went back to my room where the stoma nurse (Fran) apologised frequently but instead of taking me down straight away to theatre to have a go at correcting the valve they replaced the cath saying it was the separation around the stoma causing the incontinence this was a load of rubbish just basic knowledge of the pouch gives the impression the valve mustn’t be working for the poo to get to the surface.
They came sutured the catheter back in with no local anaesthetic because Julian the surgeon said it would hurt more than the stitches into my red raw stomach RIDICULOUS I let them do three before I refused the forth.
Another week pass's with the catheter in and my patience along with my families has run short and I’ve demanded the catheter out it wouldn’t work and very hesitantly they made me personally pull it out which really did hurt but I was never told why it did.
2 more weeks pass of cramping and not eating because of the small intestines filling with wind and food the massive explosions through the valve into an ostomy bag
I finally get a meeting with Shakeal not the Prof saying it had failed which I concluded I could have told you that weeks ago just because their the professionals surely listening to your patient or at least visiting them more than once every week is a vital part of patient care. (All Shakeal ever tried to talk to me about was the world cup rather than my situation)
In the end I demanded my ileostomy back pouch removed luckily I had my very strong mum and uncle with me because only Shakeal came once again not the Prof, was a twat tried to argue with the facts of it not working. Saying how I could go home like I was for 6 months when I had inflamed intestines from building air and food when already eating very little already lost a stone.

He agreed they would try to remove the pouch aswel as give me my illeostomy but if they couldn’t I would have to come back. Luckily they did take it out or else I would have been pissed off further. (Also I will add this surgery was put of for 3 further days due to apparently I wasn’t an emergency)
And when i went to theatre I had a canula in already, they flushed it and asked if it hurt when I said yeah a bit they started putting the anaesthetic in which burnt all y arm as I went to scream they just shoved a gas masked on my face I have had that anaesthetic at least 5 other times never like that
I woke up with the illeostomy back etc it was huge compared to my last were how swollen and inflamed it was from the Kock pouch blockage
The stoma nurse Fran their was very nice to my face and my mum but never checked in on me after this operation but Simon and Jo Buxton were very nice and rest of the nurses were great.
Got out 6 days after this op because I refused to eat the tiny disgusting portions of food that surely have no nutritional value, shepherds crappy pie everyday makes you want to be sick.
what I’m trying to say is the pouch could be great i still have know regrets cause now I no I have tried but I cant deal with any more hospitalisation at the moment. But professor Mortensen was a nice guy not good with communicating with patients and that counts with the rest of his team. ( also with a 50% failure rate with his 8 patients obviously not great when its suppose to be around 15%)
BACK HOME LOVING THE BAG

Hey Hobbsy;
It sounds like you have been through a bad time...I know for a fact that the British system and Bristh doctors are very different than American or French...they consider themselves 'Profs' and the patients are just 'cases'. I feel very sorry for what you have had to live through. It is not fair.
The k pouch is a very wondrful thing when it heals properly and functions well but you need a doctor who will follow through with you and listen when you talk and not treat you like you are just a piece of meat.
It is so unfair that he did not follow up properly for you. I am very pleased that you are content to have your bag back. At least there is that.
I am just furious that Prof did not do his job right (you are not the only one...there are 4 out of 8 that are not working properly yet including you)and did not even bother to consult a real k pouch specialist before giving up on you.
I can only hope that he will improve his technique over time and his humanity quickly.
Hang in there
Sharon

Hi...this surgery is very unique and seems to work great for some and not for others - even when the surgeon is highly skilled. I required several valve repairs when I was young and my surgeon was trained by Dr Kock (and married his surgical nurse and she became his right hand.)

Like Sharon said, the care and communication may differ outside of the US, but even here, their can be a severe lack of communication or care instructions etc.

I hope you also sent the Prof and his team a detailed letter. It's important that he clearly understands your frustrations. And that this is posted on the site so that his future patients will keep this in mind before they make a decision.

The same is true for jpouches though, sometimes it just doesn't function.

Best to you, Janice

Thanks for both replies , thats exactly what i felt like just a case or project to them.

feeling much better now just one week into home life , putting weight back on but the kock pouch wound has completely opened so nurses come everyday to pack it, but ow well be over soon