Jose AE
"This week I got a call from my surgeon/oncologist with regards to post op pathology reports. She said she had good news, and indeed they were. No evidence of malignancies outside of the bladder. 19 lymph nodes submitted, all negative. No evidence of prostatic adenocarcinoma. Thank God. I still need to master the art of bag changing. I guess it's because I have been trying different appliances/different brands. Monday I went through 4 different bags. The first one started leaking just minutes after the nurse left our house. Then my wife changed the bag and it was fine, but then I realized it was off centered and one side of the barrier was touching the stoma. Bag #3 started leaking after a while then finally #4 was reinforced with "banana" pieces and we made it work. 5 days later (Saturday) I did it almost by myself but my timing was far from perfect, my stoma was really active at that point but I had no choice since my 5 day old bag had started leaking at that point. I grabbed one of the 2-piece Convatecs the hospital gave me. So far so good (KOW). But it clearlly shows I still have a lot to learn. But in the end, who cares? Just like the doctor said, radical cystectomy was indeed the best choice. My 73+ year old bladder was in real trouble. I am thankful that the bad stuff didn't make it into the muscle. Do I feel happy about wearing a bag? No. Do I feel comfortable sleeping with a bigger bag? Absolutely not. But being here and able to talk about my status is what really counts, and for that, I feel really blessed. "
@Jose AE - Your path report is great to hear. As for the bag issues - please remember that during your healing process you stoma will get a bit smaller in circumference and your abdomen swelling with reduce. Both of these can impact the ability of the bag to stay on properly. Also I have found that your skin must be completely dry every time. I use a low heat hair blow dryer to get the barrier adhesive activated well also. As for the larger bag at night - are you speaking of attaching the night bag? I found that attaching it and putting the hose under my leg and the bag into a wastebasket on the floor works out great. I am happy that you have such a good attitude with this as it does make it easier to deal with and accept. Please reach out if we can be of any help but it seems like you are doing well. My best Linda Urbanski (moderator, Bladdercancer.net team member)
My goodness, what an adventure you have been through! That is so amazing that 19 lymph nodes all showed NED, and no evidence of prostatic adenocarcinoma. Did you have your prostate removed when you had cystectomy?
I am not a bladder cancer patient nor medical professional, just a dory caregiver. I also echo what Linda shared with you, that post-surgery swelling will contribute to urostomy fit issues. As she alluded, once swelling goes down, the bags can tend to fit better, or you are better able to find a process that best works for you.
I am so inspired by your winning attitude and can-do mentality. That will serve you a long way! I hope to hear of your continued successes. Please keep us updated as we can all benefit from your strength and courage!
All my best, Charles (Moderator / BladderCancer.net)
@Jose AE - hope that you are doing well. I usually change in the morning when I take a shower and it seems to work out fine for me. My best Linda Urbanski (moderator, Bladdercancer.net team member)