Seeing Stoma Nurse in prep for radical cystectomy May 29

Hi Rose. I'm Barb. My husband had to check in at 5:30 am the morning of surgery. The nurses told us to go back to our hotel and go back to bed as it would be mid afternoon before he would be assigned a room and out of recovery. Our hotel was right across the street, so we did just that. Someone texted us when he was taken back to surgery, when it was starting, when they were closing and when he was taken to recovery. We were told recovery could take two hours and it did. We were told his room number and that's the first we saw him after surgery. He was slow to wake up and pretty groggy but looked like himself so it wasn't scary. Two of our kids were with us. We didn't stay real long because it was 4:30 by that time and he just wanted to sleep. He ended up staying from Tuesday morning to this afternoon. His intestinal tract didn't start back up as fast as we thought so we were there an extra day or so. He is on regular food although he's not up to his usual portions. He can walk fine, just a little slower. He has soreness and tightness in his belly from the incision and the gas buildup causes some pain, but not the level he expected. They will put fluids in him through an IV for most of his stay, so he won't have much more than ice chips until the third or fourth day. The nurses will want to measure all output. He will have a drain that will need to be emptied and my husband came home with some residual drainage that we think will dry up in a couple of days. The stoma education nurses are fantastic in teaching you how to take care of the stoma and how the pouching system works. My husband is cancer free. We have had many people praying for us. We will pray for you and your husband and family as well.

My leg bag was great. It does require getting used to. I emptied it a few times but far fewer times than the regular stoma bag. It is challenging to have the stoma bag empty out whilst sitting or driving because my underwear, pants and belt go over the stoma bag. This blocks the urine to an extent. But now that I know I can manage it better. My leg was a bit red from the two straps. My stoma is rather itchy currently. When I showered yesterday I noticed more red skin and acne under the pouch seal. Worse than before. It may be nivolumab related or not. I am waiting on my RN to get back to me. I applied flonase and anti-fungal powder yesterday.

@bshultzia Thank you Barb! Your experience with your husband, has helped me to understand what to expect. I’m happy that your husband is cancer free! God bless him 🙏. I appreciate all your prayers for us. Thank you again Barb, for the support. God bless you both ! Rose

@jaxfl I told my husband how you use a leg bag at work and he said that’s what he will do. Thank you for that! Also, it’s nice to see that you’re back to work. Yes , I was reading about nivolumab , that it prevents the cancer cells from cloaking themselves a your immune system can see and destroy them.
It seems the stoma can be free without any pouch around it for 30 minutes a day. Not sure if that may help a bit. Your RN will know just how to eliminate the irritation/rash and what to do to prevent it from happening again.

I have to say that you are a strong woman. Many would fall apart mentally….but you’re able to push on. I would be so proud of myself. I pray that God puts His healing hands on you..and cures you totally and completely 🙏. Rose xx

I am a man but thank you.

@jaxfl I’m sorry Jax . I got confused. Of course, you’re a man. Probably from England? Thank you , again. Praying you and everyone else is cured 🙏Rose xx

No. Originally from the Netherlands but I live in metro Jacksonville, FL these days.

Maybe I missed some info, but is this for a urostomy /ileal conduit?
I’ve 2 months out of cystecomy and doing much better overall. So many different products out there. Initially started with Hollister, now a combination of that and Coloplast appliances/ bag systems. ( urostomy ) have learned I may not always need stoma powder if site is ok. We totally stopped using “barrier” wipes COMPLETELY. If you don’t pad off the powder, it can run into leaking issues. Also, not all stoma nurses are practicing the same. They have different product recommendations- depends on your body shape. There are a LOT of products out there. It will take some time, you’ll have some incidents, but it will get better.

I use the Hollister two piece setup. I have recurring challenges with acne and allergic reaction around the site. I started adding flonase back in and today the stoma site looked much better after my shower. I also started a leg bag as I am back in the office five days a week. Great solution to reduce frequency of bathroom trips. But the first time I wore it I had a pus filled site and some allergic reaction. Those are now healing and did not return on the second day of using the leg bag.

@conchman Yes, it’s for a radical cystectomy . He’ll be getting a stoma and the nurse gave him Coloplast. He’ll be using that also. The next day, fierce the surgery was all done. Were you able to get up and walk around the hospital? Thank you xx