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Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Excess mucus

JennyJJ
Posted by

My husband is now about 19 weeks post RC with an ideal conduit. Things had been going well but recently the amount of mucus the stoma is producing is causing the adhesive to loosen and allowing leaks. This morning he had to get up at 5am to change the bag and the new one has leaked now at 2pm.Until this last two weeks he had only leaked 4times but now he is losing confidence. Has tried plain,convex and recently advised concave bags but going back to convex. Seeing stoma nurse next week but wondered if anyone else has had this problem.

Teasswill
Posted by

Can't advise re the adhesive, but maybe he can reduce the amount of mucous. See if it varies with diet - I find this can affect me. Extra fat/rich food can give me more mucous, or if fluid intake drops too much. The mucous will diminish with time, but doesn't completely go away.

Crustybladder
Posted by

Hello JennyJJ

Three years on, I still get blobs of thick mucus especially when I don't drink enough fluid (red wine doesn't count).

I use adaptor rings with my convex flange pouch as they make a good seal around my stoma, lessen the chance of leaks and adhesion failure plus protect the peristomal skin. I use Hollister adaptor rings, they're like a flexible ring of sticky toffee that can be stretched to stoma diameter.

CB

I may appear to be listening but in my head I'm all at sea. 

Crustybladder
Posted by

Also, I forgot to ask, is your husband using a drain bag at night?

CB

I may appear to be listening but in my head I'm all at sea. 

JennyJJ
Posted by

Thanks for your thoughts I will pass them on to hubby and yes he does use a night bag.

Ianw
Posted by

Hi

21/2 after treatment and I still get leaks. I can go weeks without leaks and then get two on same day, so don't worry. 

Concerning the mucus I still get large blobs and it usually means I've not been drinking enough water. It is common, but also getting a good seal on the stoma helps. You only need a little moisture and the seal can loosen.

In regards to confidence, when I was in hospital my bag use to leak every night and I thought, how can I manage this and a few weeks after my discharge I had so much tape and glue that I was more secure than Fort Knox.

It does take time and perseverance. Does your husband have a Stoma Nurse? I see mine once a year, but I also have her phone number if I need help or advice. The Urostomy Association are always good for practical tips. 

Keep posting if you need more help.

It doesn't matter where you go, there you are
Crustybladder
Posted by

Couple of other points: I'm hairy so to improve adhesion to my skin, I shave around my stoma, very carefully, with a round tipped blades electric beard trimmer; also, I change my bag daily now, again, that reduces the risk of failure.

These days I get one failure a month at worst, usually when I'm gardening, bending a lot.

It's a process of elimination to find what works but he will get there.

CB

I may appear to be listening but in my head I'm all at sea. 

winkers60
Posted by

I’ve been fortunate leak wise as I’ve had very few.I have to be a bit careful in the area around my belly button as my stoma bag goes over it slightly.I had a couple of small leaks gardening but that was due to bending down,the stoma belt is helpful for support.I shall pay more attention to the mucus production.Love Jane xx

Ianw
Posted by

Just a tip on shaving. I use a tube, like an old toilet roll tube or an aerosol cap over the stoma as a guard to stop any nicks. Obviously, keep things santised, but it does help.

It doesn't matter where you go, there you are
Ianw
Posted by

Hi

Have the same issue with leaks it that area and for the same reason.  Usually ok if I take time positioning the bag.  I also check my stoma size every now and then to make I get a good fit. I make a template out of the peel off back plates.

It doesn't matter where you go, there you are
winkers60
Posted by

Hi Ianw,My cystectomy started off robotically but then there was a problem so I’ve ended up with a fetching abdominal scar as well.This has made it more awkward around the navel area.It’s been a bit trial and error but I’m more confident with the stoma now.It’s saved my life so I’m grateful.Love Jane 

Ianw
Posted by

Hi

Mine was done at UCHL by open surgery  as part of a surgucal i.e. robotic or open, who recovers first.

In hospital on the Tuesday and discharged the following week. The scar has healed up really well. I had to have a kidney removed the following year, due to the ureater not connecting properly, done by robotic surgery. Left with about five keyhole scars that took ages (well that's how it seemed ) to heal up.

End of the day it all worked.

It doesn't matter where you go, there you are
JennyJJ
Posted by

Thanks everyone for your replies. Thinking and reading about it we are now wondering if it is not all mucus but softening adhesive!! Anyway going to see stoma nurse this week and hoping to find out exactly what is suddenly causing this problem and what we can do about it.

Crustybladder
Posted by

In my experience it's the urine that emulsifies the adhesive that causes the failures. An adaptor ring forces the stoma out into the bag so it drips away from the adhesive area. Obviously, lying down at night can cause emulsification but a drain bag will often create a syphon effect that draws the urine away from the stoma area.

Previously, I was only a bit of an expert on pubs, beer and boats, oh the joy of life!

CB

I may appear to be listening but in my head I'm all at sea. 

Ianw
Posted by

Hi

Good to hear and hope you and yours are feeling a bit better. The forum is not just about symptoms and treatment, but everyday life and you can learn a lot of good tips with dealing with thinga like a stomas from people on this site.

Remember, all of us have gone through this journey and can share an awful lot

It doesn't matter where you go, there you are