post neo-bladder surgery

Hello.

My husband will be having neo-bladder surgery in about 10 days. We've done a lot of research and feel as ready as it is probably possible to be. It would be helpful to me, however, to know from patients how you felt a day, several days, a week, etc. post-surgery and what your spouse, friend, partner, or other person filling the caregiver role did that really helped you along the way. And, if any caregivers would like to comment, what recommendations do you have on what to watch for (what is normal and what is not), once home, what foods and beverages seemed to be best received, etc. -- Tips would be most appreciated.

Thanks much.

- Denise

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I know you will get lots of replys on this but this is one of the best post recovery instructions i've seen from the U. of Michigan
http://www.med.umich.edu/1libr/urology/postcare/cystectneobladder.htm

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Denise,
You did not say how old your husband is! I had the surgery & my husband was the caregiver & really the only thing he helped with was irrigating the catheters 3 times a day & fixing light meals.
The above site googi1 gave is very helpful.
Good Luck, I'm sure everything will go smoothly.
Cheryl

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My wife met with my surgical team, was present at each visit (am & pm) after the surgery. She knew the docs and residents and nurses better than I. I spent 28 days in two hospitals (the first at UVa where the surgery was and the second near our home 1200 miles away). She had folks on speed dial, including my hometown urologist. She was my advocate and pushed for answers when I didn't have the strength to care much. She knew my meds and how to take care of my tubes and what I could or could not eat. She knew my insurance information.

when I woke from the 13 hour surgery, she was there and told me that the surgery was succesful and that the surgeon was able to do the neo-bladder. (Everyone is prepped for neo-bladder failure, just in case it can't be done). She was there for each small victory... my first passed gas (a really big deal) my first food, my first walk down the hall with 5 tubes, she pushed my breathing exercises and charted my temperature and blood levels.

She never broke down in front of me but I was stunned to hear a year later that she had cried many times.

She had to take time away from her job, just like me. As my life changed, so did hers. Sometimes I wonder how I could have handled it all without her.

I guess there are lots of "things" you can learn to do for your husband... but you've already done the most important thing... you care, I think the rest will come naturally.

Best luck.

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First couple of days post op were the most challenging for me. Needed to learn how to get into and out of the bed most effectively and to safely navigate and how to optimally maintain pain control. I tired easily and slept a lot. By about day 3 I was able to pretty much terminate IV pain meds and things began to improve from there on. Discharged day 5 after a bowel movement and return to solid food without problems. Each of us differs in how we feel and the process and my recovery was totally without problems. My team taught me how to irrigate my neobladder on the first post op day and it was my responsibility with nursing supervision for the remainder of the hospital stay. At home it was a huge help to have food (easily digested) prepared for me and for the first week or two at home we had about 6 feedings per day of small amounts. Irrigation was a minimum of 3 x per day and I had problems with the tubing in the leg bag clogging with mucus. I walked multiple times per day starting on the first post op day and continued that and strength and resiliency gradually recovered. At about one month I had an appointment to remove the foley and begin stretching the neobladder and learning to control it. For me this was a fairly prolonged process, but I got there.

jj

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Thank you, everyone.

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Expect the unexpected, I came out of the RC with massive cramping in my left leg. Staff refused to do anything to relieve the pain. Talked my wife in to getting some Ben Gay to put on my leg and that helped some but too little to late. Finally an orthopedic surgeon was called in; I was immediately prepped for another surgery this time for compartment syndrome. Apparently some of the fascia on my calf ripped which has resulted in some difficulty with that leg ever since. Hopefully your surgery will go smoothly and you will be up and around in a few days. The odds are in your favor. Best Wishes, Mike

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Denise:
If you look back in my journal, I wrote about my 5 day hospital stay with my progress from each day. There are other posting in my journal regarding the catheter removal and such. I hope you find it useful.

https://www.inspire.com/Crossman/journal/rc-day-by-day-to-discharge/

Walking is the key!

Best wishes for a successful surgery.

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Ron, I wasn't on here when you wrote your journal, and somehow since I've been on here, I had never read your recount of your day by day hospital stay. I think that should be required reading for anyone about to undergo R/C. Especially when planning on a neobladder. Don't know how long after your release from hospital you wrote that, but I only had my surgery on 4/28/11 and don't think I would do as well remembering all the details as well as you did. I do know that I used the PCA as seldom as possible and did what I thought was a lot of walking, until I read how much you walked. The seldom use of PCA and walking was thanks to all advice I received through this website. Thank you for all you do for others who unfortunately find themselves coming to BCAN. Wonderful place to find support and words of wisdom.

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Hi, Denise,

I think you're wise to be trying to anticipate what to expect. I had the operation about six months ago. From my experience, the progress comes in stages:

-- The operation itself: Hard part is just getting to the hospital. Comfort yourselves by remembering that you're in good hands, and the doctors will do all the work. For this part, all your husband has to do on the "day of" is show up and go to sleep. I will add that I was given an epidural to handle the anticipated post-op pain, and this was the only difficult pre-op moment.

-- Post-op: Will be a haze of pain those first few days, but it will be bearable. He won't eat for a while and will be on lots of drips and have his urine handled through bags that the nurses change. Within only a few days, if he's done well, they will have him walking, as it's important to get the muscles and circulatory system going again. This is HARD but important. He probably won't want to talk to anyone but you and other close family members. He will have to keep the urine bags with him and carry them around, which is kind of humiliating, but it's only a short phase.

-- Home: About 6-10 days later, he will be discharged from the hospital and will likely still have the urine bags attached for another 12 days or so while things inside continue to heal. At home, he will be tired and still have pain, but there is joy in being home and this phase goes quickly. He'll want to sleep a lot. He should try to walk at home; again, carrying the bags around. The bags have to be changed and cleaned constantly... you could help with that if you're able. He also will need to do a chore of shooting saline solution into one tube so it comes out another, to keep the neobladder clean. (The hospital should give him the needed tools, or at least write them down so you can get them at a pharmacy.) In the early going the neo makes a lot of mucus, which is normal but simply needs to be cleaned to be cleared. You could also ask a Visiting Nurse to check in on him and help for these days. Goal for this phase is to gain strength and avoid infection.

-- Tubes out: In a brief hospital or office visit, the doctor will then take the various tubes out (it doesn't hurt much and is very quick, believe it or not), and then blesses the neobladder to start doing all its work. He gets sent home with no tubes (yay) and wearing a Depend because the neobladder will leak at first, most certainly.

-- Home again: Now comes getting accustomed to using the neobladder, going to pee not by sensation but by timing... at first scheduling bathroom visits every two hours, then stretching to three. For most people, they learn to be dry all day and keep to a schedule that is not ALL that different from people with natural bladders. At night, it's likely to leak because the muscles that avoid this are consciously controlled so in sleep the neo can do what it wants and discharge. Some people eventually don't leak at night. Personally, I don't think it's a bad tradeoff as long as daytime is totally dry and one functions quite as normal.

How will he feel? My doctor had said: "At first you will feel horrible. You'll start to feel yourself after six weeks. And after 12 weeks you'll feel not very different than you did before the operation." That more or less came true for me. Like many on this site, my "new normal" is not perfect and there are various aches and pains. But, the headline is: The neo works very much as advertised; the cancer was removed (!); and this grants a new chance to live and thrive going forward!

Food? The digestive system often gets affected by the operation (by the shutdown during surgery and after, and also changes made in the bowel areas), so soft, easy-to-digest foods are best at first. People seem to have trouble with high-fiber and spicy foods. In my case, this was difficult because I'm vegan and am committed to a low protein, high-fiber diet in part as a tool to fight and prevent cancer. I've had to feel my way through this and vary some pastas, bland soups, and other soft foods along with my veggies, beans and rice! Progress has come slowly but steadily!

One other thing from my memory: If the doctors send him home with codeine-based painkillers, watch out for constipation, which they almost invariably cause. He can take a light over-the-counter stool softener while taking the pain meds to counter that, because one does not want to "strain" in the early going. Personally, I went off the heavy meds and onto Tylenol, and then nothing, quickly.

Wishing you and your husband all the best. There is plenty of life, love and laughter after neobladder surgery. : - )

William

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Thanks Karen. Maybe BCAN will decide to do something with it so new people can find it easier.

I was writing about two days after surgery on an online diary site. I took those writings, culled out the non-essential stuff and reported here at BCAN. That's why my memory was so good on the events. I re-read it now and don't remember the events with the detail that I wrote.

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My husband had his bladder removed and a neobladder built on June 3rd. As his caregiver I can tell you it will be a roller coaster ride. Good days, bad days. Days you have to bite you tongue because he feels you are the only one he can vent at, but so far it has not been near as bad as I expectedn and I think he feels that way too. We found out he had bladder cancer in March, found out it was agressive and in the muscle, plus another agressive type also found in the bladder at the beginning of April. Referred to UT Southwest and Dr. Sagalowski middle of April. Told on April 27 the bladder would need to be removed with no chemo before and he would get a neobladder if possible (Could not do it if he found cancer or other problems when he got in there) So we were prepared for the external method if needed. The wait until June 3rd was by far the worst time. Surgery was almost 9 hours. When the Dr. came out to give us the results, I thought I was going to faint, but the surgery went well and he did not find cancer outside of the bladder. Path reports would not come back for a week. 3 days in ICU and 7 more days in the hosp. I spent every night at the hosp. Two reasons - To make sure he was ok through the night plus he is not the best patient in the world. When he hurts he can be a bear. Didn't want the nurses to have to go through that, so I tried to run interference. Path report came back great no cancer in lymph nodes or outside the bladder. No promise of a cure the Doc. said but best news we could have had. I was taught (as you will probably be) how to irrigate and flush out the new neobladder. Hope you don't have a quesy stomach. The yuck factor is pretty high as my husband said, but got used to it. Twice a day until the cath came out two and a half weeks after we came home. We went back for our check up last Wednesday and he got his cath. out and is now learning how to urinate the new way. His biggest problem isn't going but not going. He leaks alot right now, but I think that is normal in the beginning. We are going through Depends, pads and bed pads but he is ok with it. Knows it will get better. He has some constipation that is really causing him problems. Partly from pain meds. He was already on a pain management regime for chronic back pain. and partly from not eating much. Has no appetite and has not gained back any of the weight he lost. Went from about 175 to 145. Doctor said to expect to lose the first month, stablalize the 2nd month and start gaining the third.

Patience and a sense of humor is my best advice and no taking things personal when he loses it and takes it out on you. We don't have to go back to the docotr until August 10 and then in September they will start the scans and tests to make sure there is no cancer coming back or showing up somewhere else. That will be nerveracking also.

We are going to Bladder Cancer Survivor Meeting on July 25 at the Hosp where his surgery took place. Not sure where you are but we are in the Dallas area. I am sure there are groups in your area also. These are so helpful and surprisingly my husband who normally would never participate in something like that is looking forward tot he meeting.

Hope this helps. There are alot of caregivers on this site and it helps to know we are important to the healing and well-beling of our loved ones. I think my husband finally understands that we are both suffering through this together and we will get through it together.

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