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Posts: 44
Reply with quote  #1 
Has anyone had this, or know anyone that has?

I have exhausted all other options for my OAB, and this is my last option.

Its major surgery, and a huge decision to make.

Would love to hear from anyone that knows anything about it.

Posts: 4,496
Reply with quote  #2 
HI ,

Has your consultant suggested this type of surgery ?

I would suggest you contact COB Office 0121 7020820, we have a friends group made up of members that have had major surgery who are willing to talk to others. We do have various leaflets that may also be helpful.

best wishes



Posts: 44
Reply with quote  #3 
Hi Dawn

Yes. Was offered it 5-6 years ago and turned it down. Consultant didn't explain it that well and it sounded too scary with all the possible implications.

Am now with a totally different consultant. Was mentioned at last appointment as only alternative left if SNS didn't work, which it hasn't. Obviously I will need to wait for my next appointment following my op next week to remove SNS, but am almost positive thats what I will be offered.

Will give the COB office a ring in the next few weeks probably, as sounds like it could be really useful. Thank you.

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Posts: 36
Reply with quote  #4 
Hi Ladyshopper

Sorry to bother you you mentioned in one of your forums you was thinking of having a Clam Cystoplasty? Did your Consultant offer it to you? If so so would you recommend it. I am waiting to have a sec opinion for a Clam Cystoplasty or a Bladder Diversion not sure at present. I have PBS my Consultant is not sure which operation to do.

Can you go over the operation with me it would be a great help.



Posts: 1,761
Reply with quote  #5 
Hello Gill

Oh dear waiting for second opinion always adds pressure.

If you dont get a reply to your post please do ring the Office as Dawn mentioned further up messages.

"I would suggest you contact COB Office 0121 7020820, we have a friends group made up of members that have had major surgery who are willing to talk to others. We do have various leaflets that may also be helpful."

Do keep us posted.


Posts: 44
Reply with quote  #6 
Hi Gill.

I had my clam cystoplasty back in April. I don't know what PBS is, but my issues were frequency.

The op itself went fine. I was in hospital for 9 nights, and even got a free mini tummy tuck out of it (my consultant cut off the overhang they call the apron, which I am extremely grateful for). However, I had a horrendous experience and basically spent 8 weeks at home in bed due to the fact my bladder is so sensitive, and can't seem to tolerate catheters. They took the urethral catheter out after a couple of days in hospital as I was in agony despite being dosed up on morphine. However, supra pubic catheter stayed in until beginning of June and was awful.

Sadly for me, the operation doesn't appear to have worked, and my frequency has actually increased. It's clear from what the dr and specialist nurses said that they haven't had a patient who has had such sensitivity and experienced such pain from the catheter. I literally felt like I needed the toilet desperately all the time, and couldn't walk without being in extreme pain. They left it in because when I went in to have the dye test (to ensure bladder waterproof) they could only put 100ml of dye in before I was uncomfortable.

Anyway, I am going back in on 2nd July to have a bladder dilatation under general to try and stretch it. I don't really expect it to work if I'm honest, had it done 3 times over the years with no effect, but now I have this new bladder lining I guess I have to go through the motions again.

So, the only good thing for me was the tummy tuck! Despite all of this, I don't regret it, because if I hadn't had the op, I would always have been left wondering "what if". I'm lucky I can still pee normally, I just self catheterise a couple of times a week to do a bladder washout and get rid of any residual.

It is a massive operation, and I thought I had been very well prepared for it by the hospital. However, no one could have predicted the way I reacted to the catheter, and I won't lie, the 8 weeks with it in were absolute hell.

Probably hasn't helped you any, sorry!

Posts: 2
Reply with quote  #7 
just had my clam cystoplasty I have wet myself quite a lot since I came home from the hospital I had my supapubic catheter out on Wednesday and soon as I got of the bus I wet myself three time till I got home I am Still in pain after 8 weeks after op it the spams I get also I am passing urnie normally where I got told by my nurse I would never do I so confused and in pain with spams all I get told is it ok all this I have to give it time to settled it could take up to 6months to settled and any one give me some advice please
Kerry dumville

Posts: 973
Reply with quote  #8 
Hi Kerry

Welcome to the forums - I hope we are able to help you and I'm so sorry you are suffering so much.

Clam cystoplasty is an invasive surgery and although it does take time for the body to heal and settle if you are cicerbed then the medical professionals should be addressing your concerns.

Have you had a post op check with your surgeon/consultant yet? If not it might be worth contacting their secretary and asking for an appointment to discuss your concerns.

Perhaps it worth speaking to your Dr and ask if he could refer you to your local incontitence clinic (or you maybe able to self refer). The constituency clinics are very supportive and often a good liaison between Consultants/Drs and the patient. They can check everything is healing as it should and also offer emotional and practical support.

Please let us know how things go and please keep posting.

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Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Posts: 2
Reply with quote  #9 
Hi I going back to see my doctor on the 25/3/2017 I have had Cather nurse nurse out she scanned my bladder after going to toilet with in half hour it had 200ml in it I no found out I leak through the day I was out for the day I cam home and I found that my underwear was wet I still suffer needing the loo a lot I self Cather 5 times a day and the spam pains I get down below and in my tummy really hurt this should be settling now as it was done in Jan but it's not I feel low in mood my hubby is going to ask for my bladder out and have a stoma bag which I think I would like as it comes to a point where I don't want to go out much for the fear of wetting myself theses spams I get do my head in to
Kerry dumville
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