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emmasheppard

Registered: June 26, 2008
Posts: 91
Reply with quote  #1 
Hi everyone hope ur well,bac in dec,i was reffered 4 neuromodulation,but was refused due 2 the small capasity in the bladder and pain,ive now been offered,either ileal conduit diverstion with stoma,indiana pouch,or sub total cystectomy ,or toatal cystectomy ,if anyone has gone threw any of these and has any advice id be really grateful xem
Hellybobs

Registered: July 26, 2007
Posts: 302
Reply with quote  #2 
Hi Emma,
I had the ileal conduit diverstion with stoma (urostomy) about 12 weeks ago.
I had the other choices too but after doing alot of research and speaking to others who have had them done I felt my choice was the better one for me.
I have to say although the op was "text book" as my consultant said, it was the worst of all surgeries I've had but now I'm on the road to recovery I feel I made the right decision.
I did have a bad time with infection post op and aparently they are very common.
The one thing that I was told was the surgery doesn't aways work the way we would want and to be prepared for that to happen.
There is also the risk of needing more surgery because the bowel tissue they use can break down, theres a risk of the stoma prolasping and a risk of hernia and stoma hernia too.
I hope I've not painted too bad a picture for you but best to be honest.
If you want to know anything else I'm happy to talk with you.
Helen

emmasheppard

Registered: June 26, 2008
Posts: 91
Reply with quote  #3 
Hi helen,thanku 4 ur reply,and hope u are well 2 the best u can be,when u say thing dnt always go the way u want,what did u mean? im personally thinking 4 going 4 my second option indiana pouch,only reason is ive heard there can be alot of leakage with the ileal conduit,even tho im 26 having a bag doesnt bother me aslong as it helps! how long was u under 4,how long was u in hospital 4,and i suspose it would be the consultant that decides whats best 4 me,is that rite anyway thanku 4 ur reply em x
Hellybobs

Registered: July 26, 2007
Posts: 302
Reply with quote  #4 
Hi Emma,
I was under GA for about 7 hours and was in hospital for 2 weeks the first time and then had 2 more stays in hospital each being for 2 weeks due to infection and the start of a stomach ulcer due to all the meds I'd had.
To be honest I've not had alot of leaks from the bags once the first couple of weeks was out of the way.  Its finding the right product for you and having a good stoma nurse gets you there very quickly. 
My consultant gave me the option of what I wanted to do, as it was me that had to live with it.
What I meant by the surgery not always going the way you want is, depending on what your having it for, me it was IC and OAB, was that although you get rid of the bladder it doesn't mean your symptoms will go away, you could still have problems that relate to your old condition...does that make sence?
If your on facebook, I can put you in touch with a few people who've had their bladders removed but having the internal pouches??
Helen

emmasheppard

Registered: June 26, 2008
Posts: 91
Reply with quote  #5 

hi helen thanku, im afraid im not on face book ,i also have ic and oab and  i can see where your comming that even after surgery i may still have pain,  my email is fudge.kins@hotmail.co.uk if thats of any help to you,thankyou for replying and i will let you know how i get on ,waiting to be reffered back 2 original consultant as i had to go and see consultant about sacrel nerve ,that consultant was the one that said i needed surgery and gave me my options i received my letter to explain everything but just waiting on the qe to sort and get the ball moving .i think i have to be refered to another consultant as i dnt think mine  specilize in diverstions .how long in total from the word go did u have to wait untill ur op,and were there certain tests that had to be done first ,more cytoscopys etc xxx xx

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