My Husband Had RC on May 29th. For Stage 2 MIBC. Doing Well.

Posted by rose1966 @rose1966, Jun 3 5:27pm

My husband had a RC with Prostate removal on May 29th. He is coming home tomorrow. He has JP drain on left side and Stoma or right side. He has got the hang of the urostomy bag somewhat. I have Protien Shakes, mashed potatoes , applesauce, soups…He wanted to know how to take a shower with the JP drain. Also, He will drink 3 liters of water a day to prevent UTI’s. Is there anything I missed? The surgeon said that 25% of patients wind up back in the hospital because of UTI’s etc. We are also waiting for the Pathology report. The surgeon said he took out all the lymph nodes and saw no spread of cancer. I also bought Ivory Soap to shower with. He is using Coloplast at the moment. If there is any tips you can give me on how to help my husband out I would greatly appreciate them. God bless you all xx

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jaxfl | @jaxfl | 6 days ago

Turned out to be really easy. Mayo has excellent urostomy nurses who trained me on replacing the bags. Otherwise I made a full recovery. I just struggled with three AKIs and cellulitis due to chemotherapy. I tried a therapist once who turned out to be useless. And a dietician outside Mayo who was obsessed with protein. Then I finally met a Mayo dietician once who was obsessed with weight loss. I still have to meet with a geneticist at some point. But I had so many medical appointments over the past nine months I am happy to be in the monthly immunotherapy cadence. Weekly appointments gets to be a bit tiring after a while.

Holly | @eustacia55 | 6 days ago

In reply to @rose1966 "@eustacia55 Hi Holly, I think a care suite would be nice for him! He wouldn’t have..." + (show)

@rose1966

@eustacia55 Hi Holly, I think a care suite would be nice for him! He wouldn’t have to walk up and down stairs. My husband came home on the 7th day from the hospital and was able to walk up the stairs. I have a 1920’s home with no bathroom on the first floor. I was worried about the staircase, but,..thank God…he made it up. He was able to go up and down the stairs. He wasn’t allowed to lift anything ….Just walk around the house and outside. We started walking around the backyard. Then, we walked around the block. He walks everyday…to prevent blood clots (he also has a blood thinner shot that is given to prevent clots) and he is almost done with that. I gave him protein shakes 2x a day. No fiber. No fried foods. He ate bland , soft foods. Mashed potatoes, sweet potatoes. Bits of white meat chicken cut up. Nothing to upset his stomach. My husband had his bladder, prostate and 24 lymph nodes taken out. Praise God he is cancer free now. We went to see the surgeon yesterday. He still has his JP Drain in. He has to go for a Cat Scan on Wednesday morning to see if everything is okay…because the bulb it is still filling up. Hopefully, he can get it removed next Friday.
The most important thing is to help him out of bed and chairs. It’s hard for them to get up. He also, cannot bend down. Also, to wear those disposable gloves when changing the dressing on the JP drain and changing the pouch. That will prevent infections. Have him drink 2 liters of water a day. Prevents UTI’s. I have all his supplies in a cupboard in the room …the pouches, night container/and bags, alcohol pads, (adhesive remover, powder only if needed)….disposable gloves, gauze etc.
in the bathroom, I have the mixture to clean the night container and tubing. He is using Coloplast. The container for nighttime is Convatec. The insurance covers it. Your husband is in my prayers for a complete recovery and a cancer free life. I am also praying for you ….my legs were hurting after the first 2 weeks. I was not used to running up and down the stairs so much…the laundry and cleaning…..I think I over did it. The cooking. I was used to my husband being at work all day. He was high maintenance for a while. He goes back to work in a month, God willing. God bless you and your husband. We give God all the glory for showing mercy to my husband and taking him through this so well. Also, for giving me the energy and capability to help him in during this uncertain tough time.
The Visiting Nurse will come see your husband to change the pouch…check the JP drain. She will show both of you how to change the dressing and the pouch. The Nurse comes every 3 days for my husband for 2 months. Now, June 14th, my husband does everything himself….he doesn’t need my help anymore. He’s also been taking a shower since he was in the hospital. He never needed me to help him. I tried to ….but I think he wanted to do it himself. He’s very self sufficient and needs his own space and privacy.
I hope this helps. Any other questions, please feel free to message me or ask on this forum. I’m also on Inspire for bladder cancer. I get a lot of good tips there.
Blessings always…I give God all the glory for my husbands recovery. Rose xx

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@rose1966 Thank you so much for this outline! We read it outloud at our family meeting yesterday and agreed that we would set up the second floor with a a mini fridge and microwave. We decided this was a good compromise - one floor up to the tub where Jeff can sit and shower - and one floor down to the backyard where we can walk and get fresh air and sunshine.

It's so nice that we have a month to prepare. Everyone volunteered for their tasks: set up grab bars, stock medical supplies, buy dry good groceries, start freezing soups! Your recommendation for the sheets is priceless - we will definitely get those for the beds and sofa.

We can't thank you enough for sharing this. Now we can prepare and not get overwhelmed. If the family is steady and strong, we can share that with Jeff so he can concentrate on healing. I hope we can all get physically stronger so we can be more loving and patient with each other. And your guidelines have definitely put us on the right path. Thank you so much for taking time out of your healing to start ours. Blessing to you and your husband.