Gathering information for the decision time

I think what you will find here is as real as it gets. People that have been handed a bad situation who have made the best of it. We will not tell you it is easy or that it did not changes our lives but we can tell you many of us (the lucky ones) have made it and are thriving and enjoying life.

When ever I was feeling like a drama queen about the unfairness of life all it took was a short ride in an elevator to pediatric infusion and I would stand for a few minutes and watch them play as they carted around their infusion units with them and I would gain personal perspective on fair.

I have an Indiana pouch and my stoma is in my navel, if I had a bikini body (I don't) I could still wear one. I cath every three to five hours it depends on how much I drink. I can feel when I need to cath it is a sensation of fullness in the area of my pouch. I wake up once during the night like clock work between two and three and go then sleep until morning. If I let it go to long I will leak and that gets me up and going when I feel the call. I carry my supplies in a cosmetic pouch in my purse ( men I am told solve the problem with a baggy in a pocket). I carry disposable catheters, small packs of lubricant and a small bottle of antibacterial hand cleaner. I find it rather nice not to have to deal with dirty toilet seats. The first time I went had to go in the woods while hiking I though "Damn men have always had it made". There is something to be said for urinating standing up once I got the aim thing down pat. I can honestly say and this is as real as it gets that once all was healed, trained and gotten used to that my diversion has not changed my life at all.

Sexuality is different of course between men and woman, but for us there is ramifications of this as well. A complete hysterectomy, vaginal scaring and altered body image have their own issues. We as a couple had to be willing to work through the challenges and we did. I have talked to both females and males that have grown closer to their spouses because of this. Talking to your doctor as many of us did about nerve sparing is the first step, afterwards as the men here can tell you there are options.

We will never tell you this is an easy situation with easy fixes but we can tell you it is doable. That is what this website is all about sharing experiences and offering support. If you were to ask a woman in the middle of labor if she thought it was all worth it I am sure you would get a different answer once she had delivered. We are on the other side of a Radical Cystectomy and maybe we make is sound easy and it wasn't but it was worth it.