New bag man needs support.

Sorry to hear about your loss over Christmas. There is never a good time for that but it sure came at an especially bad time for you given how you've been feeling.

I'm rooting for you and hoping that you start to feel better soon. So glad that you did come back here.

It may take some time, but things will get better. Somehow, I bet you've given that advice to others in the past. And somehow I bet you were right.

Who knows? In a year, you may be giving that advice (with more detail since you'll have been through it) to someone else who just had the surgery.

I wish you all the best, and again, my condolences on your loss.

Mike

Thank you everybody for sharing your stories( I hadn't planed on coming back here at all,ever again after my last post). Also I had a very hard christmas(we lost a family member on christmas day,tragically) and I just am not ready to share much more except I am very grateful for your reaching out to me and sharing. thank you. Bernie

Life is good.
When I found out I had bladder cancer, I thought everything that I knew as good was gone.
With two and half years passing since my surgery, I realize that life was not over and life is still good.
Sure I have changed in what I can do. I can do so much more.
I am more active then before.
In June of 2007 I weighed 295 pounds. I would relax and sit back and enjoy life. I walked a mile and thought I was doing great. Since Jan 2009 I have been running up to 40 miles a week. I have changed my life and am down to 195 pounds. And life is so much better. It may sound strange, but I am glad that I went through my cancer. It changed me; for the good.
The weekend after Thanksgiving I ran a half marathon (13.1 miles in 1 hour and 50 minutes). The people that I know and love kept congratulating me on this accomplishment. They would bring up the fact that I did it with only running for 10 months or that I ran a good time for my age (50), but no one said I ran well for a Bladder Cancer survivor.
We are defined by what we are and who we are. We can choose to have all that consumes us be our struggles with recoup ration or fighting our battles, or we can take some of that time to look at life and know it is still good.
Take the time and find something good in life each day. You may see that life is not only good, it is better then ever.

Take Care
Rick

I had my RC in April, 2008 so I am coming up on 2 years. I have an ileal conduit system..which I call...well, I don't call it anything really. Sometimes I mention I had to change my bag to my wife, but otherwise, the subject never comes up.

I was pretty weak and fighting a wound that wouldn't heal after 2 months post op. It took me to September, a new operation to clean out the tunnelling in the old wound, then 2 more months. I was still 'weak' after a year, at least in my mind.

Now I am feeling pretty strong. I'm kind of a couch potato, but have occasional physical requirements for work...like slinging a ladder up to a roof ( I am an independent adjuster). So far so good.

However, it can be uncomfortable. I have been applying lotion to my adhesive area after taking off my whatchamacallit...and sitting around for a few minutes with a tampon pressed to my stoma and a wash cloth...this really helps. You do get welts from the adhesive. This seems to have a lasting affect.

Mentally...a different matter. All I can say is I am glad I am alive. I am glad it hasn't spread so far. Life is pretty much different though. Sometimes you tend to compare yourself with other's health. Why me? I think is the operative condition.

Anyway, it is a matter of keeping busy, enjoying what you can in life and being damned glad it isn't worse. The old Cat Stevens tune goes: "i was sad i had no shoes when i saw a man with no feet".

It is a matter of balancing things in your mind, I guess, and it takes a little work.

If you have any clinical questions re care and problems re the ilial conduit, feel free to ask.

Best of luck.

Bernie,

My first thought was to get you in touch with Rick because I was so impressed with how well he has adjusted following his RC. He had asked for a neobladder but woke up after surgery to find he had a bag. I was concerned about how he would handle adjusting to the idea of the bag. Some months later I had the opportunity to meet Rick in person. He is so outgoing and self assured and pleasant and his style of dressing would never reveal he has a bag. I'm sure he is a real inspiration to his family & friends.

I thought how great it would be if you, Bernie, could receive the gift of "hope" for Christmas. Hope in regard to knowing that in time, like so many of us, you will accept your new normal and adjust. I'm sure, Bernie, that you have many wonderful qualities...try to focus on the goodness that is you, as a person, and recognize that the new you, can be even better than the old you. You have lost your bladder but you will find, in time, that if you give yourself a chance, you will find you have gained in other areas.


Yes, I realize toilet activities will be more time consuming and challenging at times, but you have the strength to perserve...and you will. It has only been a short time since you had your RC. Recovering from an RC and adjusting as a BC survivor takes patience, time, support, and the belief in yourself that you can do it. You can. So many of us had doubts in the early months of our recovery but months later felt much differnetly about our situation.

I guess what I am doing is asking you to believe in the possibility that you can make this adjustment....Rick and others like him have done just that...and you can also. Your feelings of discontent and anxiety are completely natural at this stage but with the right attitude, in time, your discomfort will pass. There are positives here but it will take time for you to discover them. Hang in there. I'll pray you receive the gift of "hope" in the new year. Hugs to you, Melodie

Bernie,

I think I understand the 'not me' a bit. I have a neo but before all this took place, I never thought about my bladder and now I can never get it out of my mind. It's not the same.

I am two years into this and for me, I'm still not the same, but I am slowly getting used to this new reality.

Yeah, alot of stuff changes and will never be the same.

Glad you're doing well physically though. I was quite a while before I could say that.

As for the rest of it, you need to give it alot more time. I hadn't been in a hospital since 1963 before this. It takes awhile to come to terms with it all.

Lee