Post surgical treatments?

Thank You, Lou,

I am home now with my sister as a full time nurse. She has been doing laundry all day long as I try to control the bags. How do others manage this if they don't have help.
I am having a terrible leakage problem. Have tried everything. I ran out of 2 boxes of supplies, fortunately, there is a store nearby. The order from the hospital has not come in yet.
I never expected these problems....I was told this was easier to handle than the neobladder. I don't know.

At night, the tubing gets twisted which wakes me up constantly. They want you to drink plenty of water and the urine just gushes out. Hard to get the area dry for the adhesive to stick. Tried hair dryer, wick, etc. Very frustrating.

The home nurse came today, and she had a lot of difficulty , too. Finally, one seems to be intact...We'll see. She said it may take up to 12 weeks to handle the bags. How can I even go out in public?

The staples come out on Wednesday..I hope the doctor will be in to answer some questions.

The surgery pain has lessened considerably and I am only taking one pain pill daily, so far.
SABI

SABI,

In an earlier post I mentioned I'd come back and tell you the location of any posts that had some particular information that I share with others on this site, and I did a search and actually found one post where I included the three different items I think might be of some help to you. That post is located under the section NEWLY DIAGNOSED, and was started by Chris1121.  The post that has the information I think might be beneficial to you is in the #6 post, and I do hope it's of some help to you during your time of recovery.
How are you doing today, I expect you're feeling stronger than when you first posted last week.  When is it you get your staples out?  I remember being worried about that process, but I honestly found it to be nothing like I expected.  The doctor who removed them was quite gentle, plus I'd been listening to some music that I was using for relaxation just prior to their removal and so I think that helped as well. You might consider the deep breathing technique mentioned in the post in the previous paragraph. I was also trying to figure out if you were still in the hospital or if you'd already gone home.  Your surgeons nurse can probably give you some help concerning the problems you're having with the bags seal around your stoma, just let them know this is a problem so they can give you the information you need.
Just keep on keepin' on, and let us know if we can help.

Lou

Thank you again for the encouragement.
I had 3 months of chemo prior to the surgery and the cancer had gone thru the bladder wall (Stage 3).
I was told that All tests were negative up to the surgery.
I will find out more when I see the surgeon to have staples removed next week. I will ask those questions you mentioned.
He will be presenting my case to the clinical study group and tell me my options.;
In the mean time, I am trying to control my leaky stoma bags...ugh.

Some people in chemo frightened me about the neobladder so I chose to go with the ilial conduit........I don't know if I made a mistake or not. Anyway..too late.
SABI

I'm still a little confused as to who I should address, but I will continue with responses anyway.  I'm wondering if your surgeon has gotten your pathology reports back yet (or is that where the reference to "one node involved" comes from).  I'm curious because you can have frozen sections done while you're still in surgery in addition to their having final pathology reports on everything that is removed during surgery. I'm also wondering whether or not your cancer was through the bladder wall?
Each day you will get a little stronger and it's very important to get up and move around to get everything moving again, which I'm sure you already know.  But it all takes time and each of us heals differently as well, so don't be too hard on yourself.  You also need to give your body time to get used to functioning in a different way, and give yourself time to get used to it as well.
Keep up the good work of taking care of yourself, and keep us informed as to your progress.  You're in my prayers and I'm sure the prayers of others as well.

Lou Graham

I will use my code name from now on....SABI

Sorry for the two messages. My sister had posted the original message. But I rec'd them both.
She is helping me as I dictate to her.
I am still not feeling well after the surgery....Incision, leaking, pain etc. I will have my staples removed next week. I had 3 months of chemo before the surgery. I Never had any symptoms except frequent urination and then I was diagnosed with stage III and the cancer had blocked one ureter. What a nightmare these past four months have been