Having ileal conduit after radical cystectomy: What to expect?

Posted by leantomm @leantomm, May 27 4:39pm

Hi Everyone, I am male aged 75, having ileal conduit urinary diversion in June, bladder and prostate being removed. I was warned about ileus problems in the days post surgery and heard that drinking coffee and chewing gum can help. Also chewing peppermints . Has anybody with experience any advice ?

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rose1966 | @rose1966 | Jul 5 6:33am

In reply to @rafcer "I’m 82 yr old female with BC found in January, had 2 Turbts, couldn’t get BCG..." + (show)

@rafcer I am so sorry that you are going through this. I can tell you about my husband’s experience.
My husband 65 yrs old…had a RC for MIBC in June 2025. It wasn’t as bad as we thought. The nurses had him up and walking the next day. He was in the hospital for 7 days. The last 4 days he was eating solid food. First few days is just liquids. Basically, he was off any Tylenol after a week. Any pain after surgery…was very manageable in the hospital. Not as bad as he originally thought it was going to be. He did have robotic surgery and was under for about 6 to 7 hours. He chose a stoma with a small bag which has worked perfectly for him. He did everything himself after the nurses taught him how to attach the small bag. No problems. He can do everything he did before the surgery. It’s amazing what surgeons can do today. He did go back to his desk job within 2 months. He was getting bored at home.
When he left the hospital, he was able to go up and down stairs to get to our bedroom and bathroom. I made sure he drank 2 liters of water a day and never got any UTI’s. He wanted soup the first couple of days…but then started eating sandwiches and regular food. Ice cream is what he loved. That first week he got home, we walked outside everyday …starting with 5 minutes…then 10…and so on. The doctor wants everyone to walk as much as possible.

When he came out of surgery…I was there talking to him….but he doesn’t remember anything. In fact…he doesn’t remember the first 2 or 3 days. He wasn’t in any pain…not sure what the nurse gave him…because he kept talking about the “pretty nurses” ….which really started to bother me. But I let it pass…
The next day, he was in his bathrobe-housecoat…with socks and slippers…walking around the hospital…so happy that the operation was over!

I’m sure you must be feeling scared and overwhelmed….but from what I’ve seen going through this with my husband….it wasn’t the horror we thought it would be. He is happy he did it and has been living a great life.

Before the surgery, he had Cisplatin and Gemcitabine for 3 months because it was Muscle Invasive Bladder Cancer.

I have you in my prayers for the 7th…that all will be well and a quick recovery…you will feel relieved when the operation is over and done with.
If you have any questions…I would be happy to answer them. God bless you xx

rafcer | @rafcer | Jul 5 12:03pm

In reply to @rose1966 "@rafcer I am so sorry that you are going through this. I can tell you about..." + (show)

@rose1966

Before the surgery, he had Cisplatin and Gemcitabine for 3 months because it was Muscle Invasive Bladder Cancer.

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@rose1966 Thank you Rose for your helping message. My surgery is an open surgery not robotic because I apparently have a lot of scar tissue from previous surgery and radiation. Your husband robotic surgery took a long time 6-7 hrs…… my urologist just said operation will take longer then robotic. Glad to hear your husband is doing well.
Was he told to bring certain clothes to wear during his stay ??

rose1966 | @rose1966 | Jul 5 10:48pm

In reply to @rafcer "@rose1966 Thank you Rose for your helping message. My surgery is an open surgery not robotic..." + (show)

@rafcer thank you…yes, he’s doing well, thank God.
Here is what I packed for the 7 day hospital stay:
A bathrobe,(he walked around the hospital in the bathrobe-housecoat everyday) socks, slippers, toothpaste, toothbrush, ivory soap, books, magazines, antiperspirant…deodorant, loose fitting pajama pants, shorts, loose fitting cotton tee shirts…I think that was it.

I brought my knitting and cross stitch….to the hospital…so that I wouldn’t get bored. My husband slept a lot that week and the knitting kept me busy.

At home, I bought a handful of square waterproof pads for the bed. He only needed them for the first couple of weeks…if that.

He was also watching tv ….which he loves…very relaxing and he was reading his books and magazines. He likes to escape into a good story! Takes his mind off everything.

He was able to get into the shower on the 2nd day ….the nurses showed him how to do everything….only use ivory soap…no moisturizers…how to attach the small bag to the stoma….how to pull out the little stopper on the bottom of the bag/pouch and empty it…then put the stopper back in and change the bag every 5 days.
He has a container that I purchased off Amazon for the nighttime. It is wonderful! It even has a cute cover to put over it during the day. All the other supplies are purchased through a healthcare company and the insurance covers it.

Protein is so important when you get home…if you can drink a protein shake everyday…you’ll heal better. Chicken…cheese…eggs…etc. He also took Colace for a month or so…in case he had constipation. 2 liters of water a day to prevent infection…UTI.

My husband really liked being in the hospital….if our insurance paid for more than 7 days…he would have stayed longer. He was at Yale Hospital in NewHaven, Connecticut. He loved talking to the nurses…doctors…very relaxing atmosphere…he also really enjoyed the food.
All the special attention he was given helped him feel better and get his independence back.
When he was back home…the visiting nurse came a few days a week…she brought essentials…more soap…alcohol wipes for hands before he changes the small bag…hands must be especially clean…she talked with him about anything he was having trouble with. The nurses were excellent.
We walked around the block everyday…the doctor was adamant about walking as much as he could to prevent blood clots in the legs.
I’m sure you will do really well…It’s amazing what progress the surgeons-oncologists…urologists…have made concerning bladder cancer. This RC surgery will save so many lives and people will be able to live and thrive into their mid to late 90’s. I’ve met a few men who had just turned 90-91…and they had this operation years ago.
I am praying for you…that God (the great physician) guides the hand of the surgeon. You will have better peace of mind when the surgery is over and done with. Then, you can gradually heal and eventually do everything you did before surgery.
God bless you,
Rose

Sue, Volunteer Mentor | @sepdvm | Jul 9 10:22am

In reply to @rafcer "I’m 82 yr old female with BC found in January, had 2 Turbts, couldn’t get BCG..." + (show)

Hello @rafcer, how are you doing after your surgery? Don't expect to bounce back quickly, but have a gradual increase in strength, appetite, mental clarity. My husband has a radical cystectomy with neobladder, open surgery, 5 years ago at the age of 68. He had many issues that slowed his recovery but was up walking with assistance every day. His hospital stay was closer to 10 days due to a sluggish bowel but his pain was well controlled and taking only Tylenol at discharge. Be patient and work hard on your recovery. The worst part is behind you.

Colleen Young, Connect Director | @colleenyoung | Jul 15 8:23pm

In reply to @rafcer "@rose1966 Thank you Rose for your helping message. My surgery is an open surgery not robotic..." + (show)

@rafcer, I believe your surgery was last week.
How did your surgery go? How is recovery?

rafcer | @rafcer | Jul 16 9:56am

In reply to @colleenyoung "@rafcer, I believe your surgery was last week. How did your surgery go? How is recovery?" + (show)

@colleenyoung Surgery went well but I did need 4 pints of blood. First few days were rough. I’m still in hospital, have weakness when standing hemoglobin climbing up to 10.2 from 7.4. Walking with assistance only. Have developed bowel problems for a few days guess my intestines woke up tooo much. They did a culture waiting on that. Stool is very watery kind of worried about that. I’m refusing ferrous sulfate it did the opposite effect on me at home. Still haven’t received biopsy results from operation for lymph nodes and piece of urethra.

Colleen Young, Connect Director | @colleenyoung | Jul 27 7:59pm

In reply to @rafcer "@colleenyoung Surgery went well but I did need 4 pints of blood. First few days were..." + (show)

@rafcer, I hope recovery continued to improve and that you're home now. 🙂

debbieanddale | @debbieanddale | Jul 31 10:35pm

In reply to @141emp "@ronniek (I think this question is to me?) I did not have treatment prior to the..." + (show)

@141emp

@ronniek (I think this question is to me?)
I did not have treatment prior to the surgery and decided after my second opinion in NY. My original NJ surgeon would not make a recommendation, the original medical oncologist quoted the standard of care which was chemo first but openly expressed doubts about it working because of what they knew about the tumor! He focused more on “how tough it was going to be”. Very, Very different experience @Mount Sinai 😊❤️. I started chemo with Gemcitibine and Cisplatin about 5weeks after very successful surgery . The pathology showed it was really stage 3 , not 2. The treatments during week 1 of every cycle were about 6 hours long and I would sleep through most of it. Week 2 of every cycle was much shorter and just Gemcitibine (I think) The actual infusion s took about 30 minutes each but there is a lot of iv hydration to flush the kidneys. My medical oncologist said I would probably feel like I had the flu. I felt pretty good after treatment but nausea and somewhat unpredictable vomiting usually started 2-3 days later. Some good coaching on how to use the prescribed Zofran really helped . Minor, very infrequent diarrhea, moderate to extreme fatigue, some loss of appetite or weird tastes and hair loss also. My care team said I tolerated the treatment really well. The hardest thing for me to deal with was when I started getting blood clots in my arms sound cycle 4. All were in minor veins and not life threatening but they hurt and I couldn’t sleep again . Infusion sessions became really tough for me as the really great nurses tried to find a good vein for the IV. My anxiety would go through the roof . I had a full response (based on Signatera and scans ) after 4 cycles and completed almost 6 cycles when we stopped because of the continuing clots. I needed treatment again 1 year later when Signatera detected CTDna positive. This time I asked for a port which has made getting treatment almost a pleasure if that is possible😊 Many thanks for your wishes. I wish you the best as well.

Also, I didn’t use the service but not sure if you are aware that BCAN offers a survivor to survivor service where they will match you with someone has who has been in your situation. Their website has also been refreshed and is pretty easy to use. Here’s a link
https://bcan.org/find-support/survivor-to-survivor/

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@141emp Did they not offer you a port? Just curious.

141emp | @141emp | Aug 1 5:52am

In reply to @debbieanddale "@141emp Did they not offer you a port? Just curious." + (show)

@debbieanddale No and I was ok with that until the blot clots. At that point I was no evidence of disease on scans and Signatera. Signatera became positive again a year later and my treatment plan was 6 cycles of EVPembro. I asked for a port and my dr agreed. While the port made treatment easy , no one else liked to use it outside of the treatment center so it became a bit of a hassle for scans and ER visits. It’s with good reason, nurses need to be trained and infection is always a risk. Once I knew this I knew to remind schedulers I needed an appointment with at the vascular access unit prior to the scan or procedure . There was also the option of using an ultrasound. Unfortunately , there were a handful of nurses and anesthesia residents who thought they “ could find a good vein with blood return” . I just tell that type they have a choice of ultrasound or port , period!

sperio | @sperio | Aug 2 7:14am

In reply to @141emp "@debbieanddale No and I was ok with that until the blot clots. At that point I..." + (show)

@141emp most of us are in situations requiring an IV. As a former phlebotomist, I put myself thru 4 years of professional school as a part time job. I know veins. Either request someone who knows what they are doing or ultrasound. Do not be bashful for the consequences of "trying" is not acceptable.