new here and scared

Hi downinthedumps and welcome to this supportive group. We understand how you must be feeling at the moment as many of us have been there. It is a scary time when you do not know what to expect. Many here have had bladder removal and will be able to answer any questions you may have. If you just want to talk, let us know what you you have had done so far and it will help us to support you as you go forward. Best wishes.

Hi, I understand how daunting this seems. Plenty of us have been through it & can share our hints & tips for recovery. You should get a chat with a specialist nurse to know what is going to happen - protocol can vary between hospitals. I had my surgery 11 years ago & am happy to answer any questions you have.

i am waiting for chemotherapy first and then a scan when they will decide how to proceed. thats all I know so far apart from i have to decide to have reconstruction or removal but from what I can tell reconstruction is more chance of infection and complications. and with the bag how well does it stick as have dry skin 

Hi downinthedumps 

I had my bladder removed more than 3 years ago and lots of us who have had this done can help guide and support you through this. There are many different types of bags available if you have a urostomy, and there are also extra products you can order (which I do) to ensure the bag sticks very well. 

Sarah xx

Hi,Welcome to the group.I had my bladder removed over 3 yrs ago and don’t have a problem with the bags sticking.As Sarah says you can get extra products to help with this if they are needed.Some people try out different makes of bag to see what suits them best.I was lucky and have had the same make from the start and only a handful of leaks right at the beginning of having a stoma.It’s understandable that you are scared.I was really frightened when I first joined this board.We will all help you though as there are several of us who have had this surgery.Jane x

Hi all,

Hope im not sticking my nose in, but ive seen a few on here that have had bladder removal and opted for a stoma and a bag.

Just for info..if you are having issues or concers about appliances(bags, adhesives, seals etc) you can look up the Ileostomy association. They deal with colostomies, ileostomies, ileal conduits and urostomies. They have experienced stoma nurses who can advise on all of this. Not many hospitals are aware of this organisation. Just google Ileostomy Association UK and their various area contact details should be listed. If not, call the main number and they will put you in touch with your nearest branch. I hope none of you are paying for your supplies as they are free with an  exemption cert from your gp. Hope this helps. Unless you are already aware of course.

Best wishes

Deb

Its good to talk.

I had my bladder removed in 2016 and I know how scary it feels. I was terrified and thought I would never cope but how wrong was I. I had the support of a brilliant stoma nurse who helped me find the bag that suited me and I have stuck with it ever since. Had a couple of leaks, both my fault,forgot to close the tap. Had the operation in June and was sitting on a beach in Majorca in sept and then back to work. Have since retired . The thought of it is worse than the reality.