Cystectomy

When did you have your surgery? Sounds like you have hit a fairly typical post op low when things can seem awful. 

I know the early days can be tough, it is a huge adjustment. No-one would deny that there can be accidents, but there is a learning curve, finding the best method that suits you. Hopefully others will be along soon to share their experiences. I had neobladder which had different challenges, I recall the early days well when there was discomfort, leaks and lack of sleep. 

Best wishes for better days & nights ahead.

Neobladder was mentioned, and that it is 50/50 successful, what wasn't mentioned is that stoma bags peel off and are not waterproof. I was discharged 4 days after the cystectomy and advised for a least 6 weeks not to lift or strain, ha, the very same night I'm wet through struggling to change bedding, wash it, dry it, bathe myself, at 2am in the morning. Infact the journey home from the hospital the bag had leaked and peeled away I was wet through. Obviously shattered and exhausted through lack of sleep - you dare not sleep! Had I had had the opportunity to chat with someone who has had the same surgery then I would have declined having it myself. It's cruel and irreversible. 

Hi,It’s not uncommon to have the odd leak in the early days but it sounds like you need better fitting bags and advice from a stoma nurse.It’s probably easily fixable.It does get better.I had a couple of small leaks straight after cystectomy but none since and that was over 2 years ago.There is a lot that they don’t tell you about cystectomy but there is plenty of support and advice here.The stoma does change shape a lot in the early days.I found I had to measure it quite often and cut the bags to size to prevent leaks.Best wishes Jane

Hey Wes. So sorry to here that you are having a piss poor time of it. I’m a bit confused from your post . Did you get the neobladder or not? If you were given a neobladder the glue on bag will only be with you for approx 3 weeks and the foley cath for 6. I got my neo buddy 4 years ago and I have to tell you it is awesome. If you are only a week or so down the road , (and I can only comment about the neobladder route ), then you are in the worst part that gets much better very fast. If you went the stoma route and you will need to learn the ropes of the stoma bag then there are many satisfied customers on here who can help with that. If you have a neo let us know and I can give some tips to get you over this hump. Orillia.

Sounds like you are also having to cope on your own? I certainly wasn't able to manage any household tasks for a few weeks post op. If you do not have any friends or relatives to help, might be worth asking Social Services for temporary assistance. 

Maybe worth checking to see if there is a urostomy support group near you -   https://urostomyassociation.org.uk/local-branches/   but there should be a stoma nurse at your hosp you can contact. Also, perhaps District nurse visits via GP. 

I know it can all seem insurmountable, but as you regain strength & energy, life should improve. Best wishes.

Hi,

Thanks for being honest about your situation, I have had the same operation back in 2018 and can confirm it is no fun having a stoma, people seem to dress up the idea too much before hand and not enough emphasis is placed on the negative side of having one, please contact me if you require any advice.