Ready for Surgery, Need Advice

[Jimpa]

I was disagnosed with stage 2, muscle invasive bladder cancer, N-0, M-0 in April. Two MRIs showed no cancer outside the bladder. After 6 sessions of chemotherapy, my oncologist has determined it is time to remove the bladder (along with prostate and lymph nodes). Since I'm age 70, he's concerned about the effect the chemo is having on my bone matter. He feels continued chemo would delay bladder removal for quite some time and that it's important to get the bladder out now. Surgery is scheduled for Monday, Aug 8. I have opted to have the ileal conduit with stoma rather than the neo-bladder ( for numerous reasons). Surgery should be 4-5 hours with hospital stay of 5-6 days. Never been in the hospital so have no idea what to bring with me for a 5-day stay and how to survive it. Any ideas? Also, how do I deal with having a "bag for life". What do I need do know about the first days/weeks of living with a bag. Any advice would be greatly appreciated. I'd love to hear some real life stories about living with the bag. Thanks to all, wish me luck.

Jimpa

[Rossi68]

Hi... I had my bladder removed over 5 years ago now... It's not easy and tell family and friends not to worry if op takes longer... I was in surgery for 10hours then another 5hours in recovery... Reading material perhaps take with you... Also eventually pyjamas a few sizes bigger to begin with or shorts as stomach be swollen to begin with... Also with visitors get them to bring in what you feel like as you probably won't have much appetite.... Bowels take ages to work again and wind pain is the worst but walking about helps... Just takes time to recover and don't overdo it when you get home... I'll be thinking of you

[Jimpa in reply to Rossi68]

Rossi68,

Thanks much for your advice. It helped. If I have any questions in the next 6 days, I'll send a note. By the way, how long were you in the hospital & did you have to have a bowel movement before you could go home? Thanks.

Jimpa

[Rossi68 in reply to Jimpa]

Hi... I was in hospital for 2weeks...yes had to have bowel movement before got home... At that time I didn't know about these support groups so I was alone and scared... I didn't want to go home... I thought I'd never be better but now I know you get there

[Rossi68]

Living with the bag... Once you accept it then it's not too bad... Can sleep all night with night bag attached... In the beginning it's trial and error to find a bag that suits you... For first few months stoma will shrink so measuring and cutting bag to fit is crucial but once stoma settled in size you can get bags precut from your supplier... Yes I still get leaks but over time you learn to know when you probably going to get one... Airing skin during bag change is good too... On my bed I have a waterproof cover on mattress and also from my supplier I have washable bed pads and disposable bed pads... These save having to change whole bed if you have a leak... You will have stoma nurse to help you to begin with... I still don't like it but I wouldn't be here today without it... Any questions please feel free to ask me

[ilovecountrymusic]

All the very best with it all. While I was not happy with my diagnosis Stage 4 Invasive I am alive because of wonderful surgeons.Life with a bag does take some getting used to and I would prefer to be normal but not an option.I lead a full busy life and travel heaps..Ask millions of questions instead of worrying.

[Louise_John]

Husband 72 had his bladder and prostrate removed in May. He has always had a positive outlook on life and I am sure that is half the battle. He is now settled into a routine, fully healed and back out playing his golf 2/3 times a week.

His best Advice is to listen to the staff in hospital and ask if you have any concern. He was in only 5 nights. The stoma nurse when you come home are very knowledgeable,and can help you.

Also found people are interested to hear it is not anything like as horrible as they in ignorance imagine. It is frightening when first mentioned, but John says now it is no worse really to having a hearing aid. ( odd leak excepted)

Best wishes. Will be thinking of you

[brimas in reply to Louise_John]

hi my hubby age 70 now had his bladder removed in 2014 just keep going for check ups now just had all clear from ct scan apart from picking up gallstones but that's less to worry about

[Gareth_G]

Hi Jimpa.

I had my bladder removed in May, about 10 weeks ago now. I had a Neo Bladder Reconstruction, and my surgery lasted around 9 hours, due to the reconstruction.

I had 4 sessions of chemotherapy then had a heart attack, so no more chemo, then the only choice was to remove my bladder. Given your age, i think a stoma is a better option for you, as the neo bladder surgery can be very draining, im 56. Two and a half months on im feeling really well, all is going good, my consultant said its highly likely that im cured of the cancer.

Good advice from Rossi. I did not have much appetite for a while, but nibbling on fruit or food visitors brought in.

Keep positive, thats half the battle,,,,, Tell your family try not to worry, as i found mine was more worried than i was,,, the medical staff are amazing.

Please let us know how you get on!!!!

Gareth

[ChrisRS in reply to Gareth_G]

Hi Gareth

I hope you're well. I think I'm likely to need a cystectomy in the near future, as BCG has failed to stop CIS returning. I'm really interested to hear about the neo-bladder option. How is it going for you? Would you recommend it (I'm 57)? Where did you have it done, was it done robotically and who was your surgeon? Did they try 'nerve sparing' as much as possible?

Regards

Chris

[Gareth_G in reply to ChrisRS]

Hi Chris

Sorry to hear that the BCG treatment isn't working.

I to am 57. I had the Radical Cysyectomy and Neo bladder reconstruction about 6 months ago, and well pleased i went for it.

It was not robotic, it was full surgery under a spinal and general anesthetic. The surgery lasted for 8 hours. I was in the Royal Gwent Hospital, South Wales, my consultant is Mr Adam Christian Carter, who has been amazing.

With the surgery, for a week or 2 you will have 4 bags. A normal catheter draining your neo bladder, a Supra Pubic Bag coming out of your side, also draining your bladder, a bag with stents draining from your kidney's, and a bag draining any excess blood, It may sound daunting but its not that bad.

It is major surgery, and it will take it out of you. The 1st couple of weeks are the hardest, but it gets better, given our age 57, its worth it. My consultant did do nerve sparing, i cannot get a full erection at the moment. I am on a tablet called Cialis, and my consultant is now refering me to a clinic for this.

6 months on now, i am back in work, i'm out cycling regular, and going to the gym to get my fitness back.

My personal opinion, yes i would recommend the Neo Bladder. If you need any info at all, please let me know, even if you want to chat on the phone.

Regards Gareth.

[ChrisRS in reply to Gareth_G]

Hi Gareth

Thank you very much for replying and sharing your experience - I really appreciate it. I'm glad to hear that you are pleased with the choice you made and the progress so far. I may well take you up on asking more questions, particularly after I get the results of my next biopsies in late November.

Thanks again

Chris

[Gareth_G in reply to ChrisRS]

Your welcome. Only to glad to share my experience. There is light at the end of the tunnel. Good luck with your biopsy. Chat soon

Regards Gareth

[westseajoe]

jimpa- bring anything with you for the hospital stay- my surgery was in and out- sent home with a cath for 3 days, then back to dr for removal. then the BCG infusions. I assume you will have a tv in your room if that distracts you....you will have nurses to make your stay reasonable- and you will be given a course on how to deal with your bag. my ex- partner had an ileostomy bag for 6 months- he adjusted to it after a little while...when things are new it can feel very strange but you will adjust to it....check in with your primary when you want to know what to bring to the hospital- I would be taking a book I wanted to read....and the tv is a way to make time fly- best of luck!

[Jim47]

I'm also 70 and had the same surgery yesterday, 8/2. I'm very tender, but feeling much better than expected. You don't need to bring much other than shaving equip and something to pass the time. I brought a novel, cell phone, puzzles books. My wife brought me my I- pad for the day. My surgery actually took 10 hours (but I was unconscious), was in recovery for 8 and am now in a normal room. Wishing you all the best!