brand new here & need help

[Rudi]

In early December my doctor recommeded and performed ileal conduit surgery on me. Things went on great for a while. As of late though I have run into a problem that I don't know how to resolve. No one told me that stomas change in size over time. I had no idea that this was going to happen to me which in turn has lead to a great deal of depression, frustration and self imposed isolation due to the fear of leakage embarassment. No matter what type of supplies, stoma bags, adhesives etc that I try, nothing seems to be working for me. I had to change the bag a total of three times yesterday alone due to adherance and leakage issues.

I feel so alone and sad. My life is completely on hold due to my own fear of embarassment. Has anyone had a problem like this before? Does anyone have any suggestions as to what to do so that I can get my life back please?

Thanks so much for any suggestions and support as well as welcoming me into this group. I really appreciate it.

Rudi

[Dawnmarie406]

Hi!
I am a new ostomy as well...I was having a lot of issues with leakage in the beginning. I have only had my ostomy 2 weeks so I can relate to your feelings. Do you have a home care nurse? They can really help with picking the right supplies. My leaks were due to the placement of the Stoma, it is very close to my belly button which the wafer couldnt cover properly. If you can figure out what's causing the leak maybe you can better understand it. I learned that a wafer with a lip worked better so the indent of my belly botton was better secured. I still have to use additional tape but my wafer holds up about 4 sometimes 5 days now. Good luck!

[squid56]

Welcome to the board Rudi. you may get more answers to your questions if you post in the general ostomy section. I too, had my bladder out, but instead of the ileal conduit, I have a continent pouch which I catheterize several times a day. I do not wear an external pouch. Judith

[smashms]

i too have an ileal conduit and have had my share of leakage issues, all i can tell you both to do is get yourself a good WOCN nurse, and it is all trial and error from there. call the manufacturers and get free samples of things to try, for me i use hollister products so i have a contact person there who has been a lifesaver for me they will send samples and can even help you with issues on which product might be of use for you. if you have any more questions feel free to private message me and i will try to help you.

[Pscott1455]

Ileal conduit for 37 years. You will manage fine with careful attention to detail. Give yourself plenty of time to adjust. You may try Cymed's one piece bag. It has worked well for me over the past several years.

[Dawnmarie406]

Hi....thanks....i have actually been doing great with holister 2 piece bags...i have found my rutine and im good with it