Stoma or neo bladder

Hi Pegasus 

i can’t help with all of your questions but I had a urostomy when my bladder was removed. I didn’t have the choice of a neobladder and was having a colostomy at the same time, so I’m not sure if this was the reason for not being offered a neobladder or simply that my hospital didn’t perform neobladder surgery. 

My recovery was quite long, but bear in mind my surgery was much more complex than bladder removal alone. What is my life like? Perfectly normal other than that I have 2 stomas. I wear the same clothes, do the same things, go abroad on holiday and go swimming.I cannot think of anything a stoma prevents me from doing.

I’ve had stomas for more than 3.5 years and never had an issue with either-no infections, utis, nothing. Mine were necessary to save my life, and I’ve never regretted them. Leaking bags can happen, which is very annoying, but that’s the only issue I’ve ever had, and easily dealt with. 

For me, life is the same as it always was-I just go to the loo in a different way to most of the population! I have no pain, my cancer was completely removed in my surgery and it was a win win for me. No getting up in the night to go to the loo is an added benefit! Those who have neobladders will have similar very positive stories to tell. 

Sarah xx

Hi,I’ve had a stoma for 4 years and my life is much better without a bladder.Having Interstitial cystitis from my early 20’s I was always in pain and on a restricted diet.I got cancer aged 58 and neo bladder was not thought suitable.Like Sarah the surgery was life saving as the cancer was advanced.I did find the recovery very slow and tough going at times.I was alone recovering during the pandemic and did get depressed because I couldn’t see my partner.This group really helped with encouragement on the bad days.I was very tired and weak at the start but after 3 months felt much better.By 8 months I was back caring full time for my late mum with extra help.I’ve had no problems adjusting to life with a stoma.I still do all the things I did before and the best thing is not having to get up in the night.I don’t have children so I don’t know how easy it would be for you to manage.My sister looked after me when I was first home from hospital and it’s definitely a good idea to have someone there for the first few days.There is plenty of support here if you do decide to go ahead with the surgery.Love Jane 

Hello from France Pegasus,

My husband who never smoked and had always very a healthy life with a lot of sport was diagnosed as "muscle invasive cancer" in May 2022 ( a mistake from the urologist who thought that peing three times every night was a prostate problem and never looked at bladder over more than three years.... ). No other choice than cystoprostatectomy. He went through a 11 and a half hours intervention on the 12 th of August 2022. The surgeon made a neo-bladder. We are quite happy with this solution, life is normal, like anybody. Just it is necessary to stand up every 4 hours in the night (otherwise the neo-bladder will have too much tension). Erections are very good after 14 months, but during the first months we were disappointed...My husband is 72 years old but looks 10 years younger. We enjoy all moments, together and with our children (the youngest is 26 years old).

Take care of you

Catherine 

I had RC & neo 12 years ago, when still working part time (long commute, demanding job). Immediately post surgery you are unbelievably tired and weak, recovery is gradual over the next weeks and months. After 7 nights in hosp I could do my personal care, but couldn't tackle any significant household chores. Began picking those up after a few weeks. I restarted going out to leisure activities at 6 weeks post op, phased return to work at 3 months and back to normal timetable by 6 months. Around 8 months though before I shed end of the day fatigue. 

The main issue with neo at first is incontinence & 'training', all while you are recovering from the surgery. That was a tough time, and neos can continue to improve & stabilise over a couple of years or so. Females have a fairly high risk of needing to self cath to empty - I do this, but it doesn't bother me at all. Getting up at night to empty has been the hardest aspect. Otherwise, I am getting on with my life, with peace of mind as far as BC goes.

wow now that is what I want to hear, thank you so much

Thank you so much I wish you a wonderful one future

Thank you for your kind words and your reply, enjoy France

thank you Jane as always you are a comfort to me.

Hi Pegasus, 

It's normal to feel confused and scared. Your fatigue pretty much guarantees that. But that will pass as your treatment progresses. I had the stoma done a year and a half ago. It takes a while to get used to it. At this point it, I can do anything I want. The arthritis in my right knee resticts me much more than my stoma. I'm very active. (I went motorcycle riding today). 3 years ago, my wife turned the cooking over to me and I'm teaching our 8 year old granddaughter cook and bake. Every Friday she comes over after school and we make supper and dessert for her family. 

Basicly, almost everything is back to the way it was before I was diagnosed with bladder cancer, except I have a a stoma bag glued to my waist AND I can sleep through the night now instead of running to the bathroom every half hour.

The part you are going through now is very tough; but it will get better. Sometimes sleeping for 2 days is the best thing to do; it certainly was for me. Good luck. Please let us know how you are doing.

JD