Preparing for Surgery – what to get / do

[James2018]

Hello,

I’m relatively young male at 40, diagnosed with bladder cancer and i’m going in for a neo-bladder, radical cyscstomy.  I am looking for guides/resources/tip on what to wear/bring during the recovery period at the hospital and at home.  I have many questions, I figure there should be a guide somewhere but couldn’t find something.  Questions i’m thinking about:

* Can I wear underwear or anything immediately after surgery

* Can I wear pants at all after surgery or at home? If I have a supra catheter will interfere with waist band?

* Where do I get catheters from? how do i figure out which ones/size I need?

* where do I get washable bedsheet covers?

* does a nurse come home to inspect incision? who does that?

* will I need a nurse or someone at home at all time?

* how does a supra-catheter get removed/sealed up?

* what food can I eat? what should I prepare to eat at home afterwards?

*  I heard about getting small icepacks for testes? Is this a good idea?

any feedback or links would be helpful!

[SJay]

Hi James

I had my RC with neobladder in April 2016. I was 65 and in very good physical shape.  I’ll try to answer your questions.

– You will just wear a hospital gown after surgery until it is time to go home. I was in hospital for 6 days.

– After the hospital you can wear loose pants. My wife bought me some oversize scrubs to wear. I had my suprapubic taken out at the hospital so it didn’t interfere. You might want to ask if that is something your surgeon is OK with.

– When you get your Foley catheter out you will see an ostomy nurse. The nurse will instruct you on how to self cathterise, give you some supplies and let you know where you can purchase more. Usually there are drugstores near hospitals that sell supplies such as catheters.

– Can’t remember where I bought a fitted waterproof bed bedsheet. Maybe on line. The same place that sells catheters will also sell waterproof washable bed pads about one meter square that are useful.

– I had a friend that is a nurse remove my stitches. Your GP can check the incision if necessary and remove the stitches/staples.

– You don’t need someone at home. My wife was with me and it was very helpful but I could cope OK on my own from the time I got home.

– You can eat anything you want as far as I remember. Any restrictions will be included in your discharge instructions and explained before you leave the hospital.

– My testes were swollen in the hospital but eventually went back to normal. I didn’t do anything special about it.

I hope you have someone to help you out in the hospital. The nurses just don’t have the time. Someone to get you a dry gown, help get things to brush your teeth and wash and pick up some non-hospital food is really helpful.

Good luck with your surgery. Let me know if you have more questions. PM me if you want. Once you have got through your recovery you can look forward to doing everything you are used to doing.

Cheers

Stephen

[David Smith]

Hey James,

this is my first time on this site,found out about it today at the bladder cancer walk, I may be able to help you with some of your concerns. I had my RC in Feb. 2018 and like you didn’t really know what to expect , except the fact that the RC was necessary. I’m 66 and in good shape which led my surgeon to believe that I’d be a good  candidate for the neo. He was right and the surgery went very smoothly. I was discharged after 7 days with the foleycath and the osteomy bag (from hell ). My fashion statement of  choice was a baggy t-shirt and sweats. They gave me a script for hydromorphine for the pain but only took 2 pills and ditched them, they bung you up and you sure don’t need that with a stitched up colon. I took some Tylenol when I needed it which was only a few times when Igot severe headaches and night sweats from urinary track infection from the foleycath. These are common and in my case I had a 105 degree fever . The longer the cathe is in the more prevelant. Mine was in for 61/2 weeks. The bag from hell came off 3 1/2 weeks post surgery, what a releaf . Get up and walk around as much as you can post surgery. I started doing upper body free weight excercises from a sitting position,2 weeks post surgery and started going out of the house for short walks after I started getting bored with Netflicks 1 wweekpost surgery using leg bags which I only used when I had to ,( had a couple of stinky malfunctions ) what is most important is that you pay close attention to the nurses when they are irrigating your bladder ask all kinds of questions of the most qualified nurse that attends to you . She will be a senior nurse, you’ know her/ him. In the last 2 days of your stay , demand that nurse shows you and allows you to irrigate yourself because when you get home , you’ll be on your own ,with the exception of the at home nurse visits . Be ingenious , figure out ways to do this on your own so you don’t get pee all over the bed (all you need is a bed pad that you can get at any hospital supply . It goes under the sheet) use those absorbent pads they use for under pet water bowls or litter boxes under you when you irrigate. If you have a significant other they will need to help you initially but you’ve got to get good at doing it by yourself ( you’ll have 6 weeks of it, minimum 4 times a day and be diligent , you don’t want mucus build up and infection. I went into work occasionally with the bags on but if you don’t have to….don’t.)

It all gets easier from this point on. I’m 8 months in now and am eternally grateful for my neobladder and the care I received at Sunnybrook, and am hoping that your experience is as painless as mine. Stay very positive , enjoy the chill time your going to have on the couch reading etc. I’ll keep an eye out for your posts, when you’re getting down or scared or are unsure of the journey , holler out and I’ll try and help.

 

Good luck,

Dave.

 

 

 

 

[James2018]

Hi Dave,

 

Thank you so much for telling me your story; it helps reduce my anxiety around the procedure!  I’m not sure if I’m going overboard, but I wanted to ask, when you got home were you able to go up and down stairs?  We’ve got the bedroom upstairs and I wasn’t sure if I should bring a bed down to the main floor.  My wife is suggesting we rent a medical bed and a walker for a month so I can rest and recover better.  Is this overkill or a good idea?

 

James

[David Smith]

Hi James,

No, you should not have any difficulty with the stairs. By the time you leave the hospital you should be walking well.  Push yourself to walk in the hospital halls, within their guidelines ,the more the better. Within reason and with proper advise from your doctor, you should be adopting the mindset that you are an athlete in training camp, the first days will be tough but it gets easier each day.

when I came home from the hospital, we set me up in a separate bedroom. In retrospect this was very wise. First off, you will not be the most pleasant bedfellow for a while, you will already know this after your week in the hospital. Getting comfortable while juggling the 2 drainage bags and their precarious insertions,makes getting comfortable difficult. Both you and your wife will under a lot of stress even though your now safe at home, you both will need to get the best sleep that you can. I wouldn’t suggest you share the same bed or room. You will have a lot of parafanalia for bathing and irrigating, I forgot to mention get scented baby wipes for cleanup during irrigation’s. a double or queen size bed close to the bathroom is preferable. You will have 2 urine bags and as you shift from laying on one side to the other you’ll need to shift the two bags from the floor on one side of the bed to the floor on the side that you are now facing. Make sure the bags are on the floor and not the bed. Your urine will be draining into these bags with the benefit of gravity only ( no muscle power ) so you want to give your new bladder the best chance to drain , avoid mucous build up an infection. I know I’m jumping ahead with a lot of this advice but I’m just so happy to share this stuff with you cause I virtually went home blind and had to figure this out for myself. Hope this helps. Keep asking as you need to know.

regards

Dave.

[gwallyab]

Hi James,

I think David covered a lot of things.  I might just add a few others.

I was 45 and in good health otherwise when diagnosed in 2015. Had RC/Neobladder in March 2016.  Spent 3 week in hospital due to some minor complications so when I got out all I had was a catheter for 4-5 days and then had that removed and was on my own.

Here are a few tips:

1. Kegals, Kegals Kegals.  Do them before you go into the hospital. If you want to PM me with your email I can send you some kegal exercise sheets I got from a fellow Neo that I think really helped me. Once you are in the Hospital recovering, you’ll have a lot of free time in your bed so you can keep them up a couple of times a day. They help

2. Brings things to make yo comfortable in the hospital.  Your own robe, a pillow, 6ft cord to charge your phone and slip on slippers for walking around in the hospital.  Remember its a hospital not a prison. Make your self comfortable.

3. Don’t fight to go home if they want to keep you there.  I was lucky and went home with only one tube sticking out of me (catheter) after 3 weeks. Stay as long as you can.  They take great care of you.

4. Walk as much as you can, while in the hospital and when you get home.  Helps to build strength and get things moving. Even after 3 weeks in hospital, when I got home could make it around the kitchen, living room of my house only 2-3 times a day at the beginning before I had to lie down.

5. Yes, you can eat pretty much what you feel comfortable with once you get home.  Get stool softeners. they’ll help if things are sore and the pain killers/tylenol will bung you up.

6. I found an online store that sent catheters to my house overnight.  The Ostomy nurse will likely size you up for the right catheter.  I would suggest the pre-lubed ones.  Better that messing with lube 4-5 times a day or more. They are a bit more expensive but worth every penny.

7. Once the catheter is out you’ll need depends or other pads. it will be frustrating for a while but it gets better. I only wore depends really at night and progressed from a big pad to a light pad during the day after about 6 weeks but never really leaked during the day (Kegals!!). Was back at work after 3 months at home with no pads and no leaks during the day.  Leaks at night were off and on for more than a year. Always wore a small pad but now I wake up when I have to go. I also manage my fluid intake pretty well.  Very little after 9pm and am usually in bed at 11.  Can drink longer into the evening now after 2.5 years and don’t worry about leaking.  Always am able to get up to go in the night.

Happy to answer any more questions you have. Recovery for me went well overall. The docs said mainly due to my “young” age and overall good health.  I am back to 100%, working and more importantly, dry, day and night. The docs said I would have to do the kegals for the rest of my life but after almost 3 years, I don’t have to but I work out and exercise regularly so maybe all that helps as well.

Good luck with your surgery!

Garett

• This reply was modified 6 years, 2 months ago by gwallyab.

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