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10 months 5 days ago #54670 by Abby5566
Hi
Thank you for the info i will try and find u on canada site.

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10 months 5 days ago #54669 by Abby5566
Hi i am new to the community. I have a question i am 20 days post op and still in hospital. The neo bladder the put in is having issues. I have the been leaking urine out the incision. And out the staples and around the tube lines to the point that i am soaked threw dressings every hour if not sooner. They cant seem to figure what what the issue is. They even routed the catheter lines into a colostomy bag to catch overflow but thats not working either my skin is so sore from them pulling off the dressings. I am very discouraged and just want to know if other people had drainage issues. And is this normal. I had very invasive bladder cancer. Everything went so fast without much time to think. They went in 2 times to do turp within 2 days to remove tumor but were unable to and removed everything 1 week later. Any input would be helpful. I live in Canada. Thanks

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10 months 1 week ago #54662 by Jack R
Abby,

Anytime your care team is unable to provide solutions to problems, it is time for a second opinion. You should NEVER be left discouraged or at a loss for what can be done to asddress ANY issue you encounter after surgery. That is the DUTY of the care team.

Call them. Ask - in the strongest terms - if your health is at risk because of the situation. If urine can leak out, and you are wet, bacteria can migrate in - you have an open wound that needs to be cared for. Where drain lines are put in to draw off fluids, the surrounding external tissues MUST be kept dry.

Sensitive skin is another issue - you may be reacting to tape - paper tape is for some less irritating than plastic tape, and some people are sensitive to some of the many forms of tegaderm, a clear plastic film covering that allows inspection of a surgical site with out removing the covering. Again, the care team has options and solutions once you get their attention. barrier creams may help with skin issues.

If a referral is needed, ask the care team for a referral, or follow whatever procedure is necessary to obtain HELPFUL and COMPETENT care. You deserve a recovery without unnecessary stress, pain or complications.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
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10 months 1 week ago #54661 by Moonerj
Hi Abby5566
If you are interested I may be able to assist you. I co-founded Bladder Cancer Canada. You can contact me through the Bladder Cancer Canada Discussion Forum.
https://forums.bladdercancercanada.org/
We have a patient outreach program, and several volunteers who would be happy to speak to you regarding their experiences with the neobladder.
All the best,
Jack Moon

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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10 months 1 week ago #54660 by Abby5566
Hi i am new to the community. I have a question i am 20 days post op and still in hospital. The neo bladder the put in is having issues. I have the been leaking urine out the incision. And out the staples and around the tube lines to the point that i am soaked threw dressings every hour if not sooner. They cant seem to figure what what the issue is. They even routed the catheter lines into a colostomy bag to catch overflow but thats not working either my skin is so sore from them pulling off the dressings. I am very discouraged and just want to know if other people had drainage issues. And is this normal. I had very invasive bladder cancer. Everything went so fast without much time to think. They went in 2 times to do turp within 2 days to remove tumor but were unable to and removed everything 1 week later. Any input would be helpful. I live in Canada. Thanks

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1 year 3 weeks ago #54320 by Alan
Davey, welcome. There are several that post and I really welcome your participation as a neo bladder survivor. Many people come here asking for help and advice but, there simply aren't enough neo bladder members! Glad you are here.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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