Jose AE
"There's always something new to be learned. I have been using Coloplast Sensura Mio Click (2 piece) without leakage problems for over a year. Well yesterday, a few minutes after I changed my bag I noticed the bag (pouch) was leaking from the bottom somewhere near the spigot. At first I thought I had left it unplugged but then I realized the bag itself was leaking. No big deal, as this is a two piece appliance I didn't have to mess with the barrier, only replace the bag itself, something I really like about the click system. But from now on I will pour some water in a new bag before I click it in place. I don't expect this to happen often but it my happen again. Just my two pennies for those of you using this kind of system. Happy bagging everyone!"
that is great advice! I am glad it wasn't a big deal and you only had to replace the bag. We appreciate you sharing with us. Jill (Team Member)
"I had checked this page several times since my latest post in September of last year and had not seen any new topics, posts, etc. It shows I'm not following anybody when in fact I had been following at least 2 people. I was just wonder if this web page is still active. It's been almost 14 months since my RC/IC and just recently I noticed some blood in my urine (with no other major symptoms). I sent a message to my surgery group and was given an order for a urine culture. Not sure how to handle this, last time I had a UC I was still able to pee "normally". I understand it's not recommended to take a urine sample right from the urostomy pouch but rather directly from the stoma or through a catheter. Any feedback will be greatly appreciated."
thanks for your update. Yes, our community is still active. To see the latest updates, use this link to see what our members are saying: https://bladdercancer.net/community. I am glad you sent a message to your surgery group, they should be able to answer your question and your concerns with collecting the urine through the urostomy pouch. In the meantime, I did find this article, I hope it is helpful: https://www.ostomy.org/wp-content/uploads/2021/04/Urostomy-Sample-Instruction-Card-for-Patients-2018.pdf. Please keep us posted on what your doctor says. Jill, bladdercancer.net team Will do. Thanks for the links.
"More than 6 months after my RC still have been having ups and downs. I needed an inguinal hernia repair back in June. This hernia was on the right side and had become incarcerated which caused pain and partial blockage of the small intestine. Repair surgery relieved the pain but I still struggled with some constipation. Now just weeks ago I noticed a new hernia on my left side which causes pain at times and has already become visible. I will be seeing a surgeon in two weeks. As for my RC, my next follow up tests and evaluation will take place in mid November."
thank you for sharing with us. I wish you were having an easier time with all of this. I am glad you will be seeing your surgeon soon and you have follow up tests coming up. Please keep us posted on how you are doing. We are here for you. Jill, bladdercancer.net team
"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)
thank you so much for this generous update!
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)Thanks. You are absolutely right, my stoma has gone from 1 1/2" when I was sent home to 1 1/4" two weeks ago and last time we checked it was (is?) 1 1/8". I have noticed changes in the shape of my abdomen as well. I haven't used a blow dryer but I towel dry the area as best as I can. Last time I had to wash with Ivory soap and rinse well to be able to remove all the adhesive residue. And yes, I am using the big night bag attached to the regular bag. So when you say you put the hose under your leg, you mean running the hose straight down then under your leg? Or is it between your legs and then under one leg? I guess that might be fairly easy if you sleep on your back. I sleep on my (right) side. I place the big bag into one of those square plastic buckets they give you at the hospital. I keep it on the floor close to the bed. One of the issues I've encountered is waking up and finding my smaller bag about half full. That has happened a few times and when it does I have to start manipulating the long hose until the smaller bag completely drains out. Guess I have to find a better way to route the long hose to make gravity drive urine straight into the big bag. Thanks for your comments. I had the bladder, 19 lymph nodes, prostate, and seminal vesicles removed. The pathology report shows pieces of left and right ureters were biopsied as well. It's the only way they can determine if cancer cells have spread to those other areas. In women it includes removal of the bladder, urethra, uterus and the anterior vaginal wall. firstly great news on the pathology results. That’s fantastic. It does take time to get to used to living with a bag. Do you use a night bag to allow you to sleep through the night? Some tips are to make sure the area is completely clean before the next bag is applied. A barrier product may also help with bag adhesion. The flange extenders (bananas) definitely help to lengthen the length of the bag wear. I find if I change early in the morning, my Ostomy is less active. Please feel free to ask any specific questions we may be able to help with. Laura, Moderator, BladderCancer.net Thanks for your response. I have used bananas at least twice, they seem to help a lot but I have to admit that the adhesive is so strong it takes some time to be removed with just plain warm water. I think you are right about changing first thing in the morning. I have to work on that. Last time I changed in the afternoon and my stoma was spurting urine like crazy. mornings definitely good. Are you using an adhesive remover? I think especially with “bananas” this is key for removal and to protect your skin. Laura, 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)