Neobladder or Ileal conduit and stoma/bag ?

. Hi Roger. Could I welcome you to the community and our corner of it. We have members here with experience of both routes and I am sure they will be along to share experiences. I was also T3 but took the different path of radiotherapy and bladder preservation, so can't help with RT. Best wishes.

Hi Roger,

After 4 months of Chemo I had my bladder and prostate removed in August. I have an ileal conduit /stoma and have found it reasonably easy to get used to. Its all very new to start off and I am pretty sure I am not at my last choice of bag system as trying out different makes/types is part of it all. Getting used to managing the bag/stoma day and night is a skill that I have not got perfect yet but I now rarely have problems at night if I do everything I am supposed to do. Change your base/pouch regularly,emptying regularly, timing your evening drinks and amounts and trying to keep air out of your night bag. My Stoma Nurse is very good and set me off on the right way which is a great help. I have not had a neobladder so cannot do a comparison.

As for coming out of hospital  I was out in 4 days and had grasped the basics of my stoma/bag etc but was tired for a week or two after. There are pants to go between your pouch and your skin and pouches to go over it but it is just a warm feeling not uncomfortable. I slept on my back for the first 4 weeks and then was able to arrange myself so I could sleep on my side. Remember your Stoma Nurse is there to help.

Good luck whichever way you go

Steve

Hi Roger,Welcome,I hope you will find lots of advice and support here.I had my bladder removed in September last year and had an ileal conduit.For me this was the best option due to a complicated history of chronic bladder disease before developing cancer.So far I have adjusted well to life with a stoma.Since having the stoma it’s been great to be able to sleep through the night without the constant loo trips pre surgery.I keep the night bag in an bowl by the bed and have had no accidents at all.I sleep on my side.I’ve had hardly any leaks during the day,gardening seems to have caused a couple.If the bag is changed regularly you shouldn’t notice any odour.Perhaps you could try writing out the pro’s and con’s of neo bladder and ileal conduit and see if that helps with a decision ? Whichever you go for you will need to be as fit as possible before the cystectomy.It is a big operation.Do you have someone who could be there to help out when you are discharged ? I was discharged on the 10th day but was weak after a bowel complication.I’m interested to know whether there is much variation in recovery rates between men and women.Best wishes,Jane 

Hi Roger

I'm sure that Teasswill can explain fully life with a neobladder. Meanwhile, here are my notes on life with a stoma that I usually give new patients:

The stoma - your stoma will be 25mm to 35mm in diameter, pink, wet, look wrinkled and ooze mucus which is normal. This makes your wee look cloudy but that's ok. The stoma pulses, it is the maddest thing to watch but then it's made of bowel so that's to be expected. 

The bag/pouch - the stoma nurses will train you how to manage and change the bag. It's a doddle after a few changes and you will develop your routine. You will get a shoulder bag with pouches, adhesive remover spray, wipes and disposal bags in it. It takes a few weeks to find the best bag for you. I use adaptor rings too as the ring (like sticky toffee) creates a better seal around my stoma and stops the skin from getting soggy and irritated. I use Pelican platinum convex pouches with Hollister adaptor rings. Once your stoma has settled down you can have the bags laser cut to stoma diameter size to save you having to do it yourself. All the kit you will need is available free on repeat prescription.

Leaks - are rare but inevitable. When I go out away from home I take spare boxers, trousers and my shoulder bag with all the kit in it and leave it in the car boot. Otherwise I take the basic essentials in an ipad shoulder bag. You need to empty the pouch frequently. I monitor mine by patting it gently. Keep an empty drinks bottle in the car for emergencies or you may end up like me, standing in the central reservation of the M4 in a jam, splashing my shoes!

Nights - I plug in a drain bag to save having to get up to empty the pouch. I use them for two nights only as they get a bit smelly if used for longer. I do wake up several times a night and check it's stuck properly. I have the drain bag on a 'display' stand stood in a square washing up bowl to protect the floor, and in the early days I had a waterproof cover on the mattress under the top sheet, a bit sticky but got used to it though don't use it now. 

Usually, I change my bag daily and always and always after two days. It does not smell unless it has leaked and your clothes have got wet. My pouch failures have all occurred on the second day or on the second night while on my left side when I’ve not done a daily change. The weight of the tube pulling on the pouch seems to cause the adhesive to give way. Overall, I sleep in phases but have got used to it now. Dry nights are the norm, wet ones are rare.

Your stoma is most likely secured with tiny staples and should be ok to roll around in bed but I've never laid flat on my stomach. I have a couple of staples working out around the peristomal skin area, my stoma nurse tried to pull one out with pliers but I went with it and we landed in a heap!

Radical cystectomy - video information. If your recommended treatment is having a radical cystectomy with either conduit/stoma or neobladder reconstruction, the Royal Berkshire Urology team and bladder cancer patients have recorded seven short videos that explain the procedure, options and life after surgery. You can see the videos here:https://www.youtube.com/channel/UCQhfuljB7v0w6tcv-BxxGuQ/videos?sort=da&flow=grid&view=0

Take a deep breath then watch Alison changing her bag on Youtube: https://m.youtube.com/watch?v=3UqA2dC5aU4

The bag doesn't show under your clothes so nobody knows. I wee faster now than any other bloke in the gents which has provoked curious comment. I tell them it's a gift! I go in disabled loos too as they are usually cleaner unless shared as baby changing units. You'll be getting a free RADAR/NKS key for the special locks on many of the doors. I've been challenged by two people waiting to get in, when they accused me of not being disabled, I told them that only 8% of disabled folk use a wheelchair and that not all disabilities are visible and walk off.

You can order free samples of fake stoma, pouches, adaptor rings and adhesive removal spray from the suppliers either online or by phone. Suggest you contact Pelican Healthcare, Hollister, Coloplast and Clinimed. I used the fake stoma to get used to the idea before surgery so it was less of a faff after the op.

Avoid soap and shower gels with moisturiser as this impedes adhesion. I use the Simple shower gel range. Being hairy I also shave carefully around my stoma with a beard trimmer (guard off and round tipped blades) rather than a razor as it doesn’t irritate the skin.

You will be measured for a lycra belt some time after your op and they are free to us 'baggies' or stomates. I wear mine when doing any heavy manual work to avoid herniating my stoma. Some pouches have plastic loops so a support belt can be worn with them. I find that boxers elastic does the job.

Hope this helps a bit.

CB

First of all, there is no one best or right option. As you are doing, it's weighing up the pros & cons of each, to decide what will suit you. It's a difficult decision, but most people soon get used to whatever they end up with. The hosp will always mark up for a stoma as default in case they find another option isn't possible.

My hosp put me in touch with other Px to talk too, which gave me more information, but didn't make either option more appealing! I also had a dummy stoma pack to try out. From this, I thought I'd probably want to empty the bag about every 2 hours to keep the weight & size down, which wouldn't have been very convenient commuting to & at work. However I didn't fancy the initial incontinence of neo. Anyway, in the end I plumped for neo, feeling at least I was aware of what was involved. 

The training period was tough, while still tired & weak, recovering from the surgery, but I had nothing else to do. So life revolved around the toilet for a while, keeping records of timing, intake & output, learning to hold urine & stretch the neo, as well as a new 'full' sensation & technique to empty. Mega incontinence pads at first, gradually reducing over the next few months. I learnt to tailor & time my activities around toilet visits. I was able to start a phased return to work at 3 months post op & coped OK with toilet visits then. Daytime is now fine, I can go around 4 - 6 hours depending on time of day, intake & so on. Some find they achieve continence very quickly, others take longer. It can be frustrating.

You also usually have to learn to self catheterise & a few people have to rely on this long term to fully empty. I'm one of those but don't regard it as any drawback. 

I must admit, the getting up at night has been the hardest aspect for me & what I dislike most. Until I was diagnosed with BC, nights hadn't been a problem & I thought I could manage it OK. But because body sensation is different, & muscles tend to relax at night, it can be a long time to gain night continence. Men seem to find this harder & some never do - but they can use a condom catheter & a bag at night to avoid getting up or leaks. I just hate waking to an alarm & in the early days it was at least twice a night. After a while I abandoned the alarm & relied on sensation, although it was often a wet pad that woke me. Gradually things improved & I have got used to it, just getting up once a night. I find if I don't drink more than a certain amount during the day, sensation usually wakes me at a suitable time. I still use a light pad at night as I do leak when full if I don't wake. 

I'm now 9 years post surgery & happy with the overall outcome. This year I have retired & with COVID I don't even need to get up early any mornings. I can usually get around 4 hours sleep before getting up & another 4 - 5 after that. 

You will need some help at first, whichever option you choose, although with a bit of organisation you can probably manage a lot on your own. Building up walking is important & lots of rest, drinking plenty & eating little & often. I could do my own personal care but no housework, cooking, laundry at first. Gradually started picking up activities after a few weeks. Your young age will be an advantage but it's important to take all the time you need & pace yourself, to build up strength & energy again. Total recovery is around 1 month for every hour in surgery. I was age 57 at time of surgery & back to doing all usual activities about 6 months post op, but it was 8 months before I shed end of the day fatigue. 

best wishes & happy to answer any other queries.

Hi Roger,
I too was diagnosed with stage 2 grade 3 bladder cancer this year, and opted for a Neobladder and have no regrets.

I’m a 54 year old male and had my operation in June and 11 weeks later I was doing pretty much everything I was before.
Obviously recovery time depends on many factors but I was, and still am, fit and active which helped my recovery time.

I do not have to self catheterise, and only did it a few times whilst training my Neo. 
Day times I honestly feel no different to pre-op. I wee no more or less, it’s just a different technique to void; easily learned.
Night times I do wear depends, but more often than not they are dry in morning. I set an alarm for 3am and 6:30am, to visit the loo, but luckily I can fall back to sleep pretty quickly so am not overly tired because of that.
Maybe I am more tired in the evenings than than before, but not majorly so.
And if a full nights sleep is your deciding factor you can use a condom catheter and sleep away and it will drain into an overnight bag as per a stoma.
I did try but did not get on with it and if honest my urology nurse was not that keen on people using them as you don’t get to train your Neo at night, and so it would never improve. But maybe a coupe of times a week? 
like a lot of things what doesn’t suit me will suit someone else and vice versa, but you can certainly discuss this with your surgeon.

Still drinking too much alcohol! and even though some bowel is used in constructing the Neo, I eat what I what and no difference in my movements.

I’m happy to give you any more details on my op and recovery. Just ask.

cheers and all the best.

Hopefully I'm doing this right and you can all see this reply, thanks very much for your fantastic and quick responses, they are really helpful and hugely appreciated. I think I'm going to be more comfortable choosing the stoma option, mainly because of the tiredness/sleeping aspect which concerns me (I'm even more grumpy than usual when tired so can't imagine how I'd be feeling like that on a permanent basis) and also because of how hard the recovery sounds for the neobladder when I live on my own and support will be tricky in the current circumstances. Plus I do have some personal experience of stomas as my dad has one following his bowel cancer from a few years, and he has handled it all amazingly well. So I think I'm leaning that way but I know it is by no means an 'easy' option and it will be tough but it it's the price for being alive and cancer-free I will take it. So thank you all again, your personal comments and the video links were invaluable. It's great to know there are lovely people like you out there willing to offer such brilliant advice and support.

Thank you all again, best wishes to all and keep safe and well.

Roger.

You'll do well, going in with such a positive attitude. Hope all goes smoothly for you.

Thank you. I've told the hospital my preference this morning and they said that they can't give me a date for the surgery yet as due to a rise in Covid cases they are dealing with and beds being full it may need to be delayed. Hopefully not for too long and it can be done asap.

Hi Roger.  I chose to go with a stoma bag.  My stoma is called Basil (as in Fawlty Towers) .  I don't feel uncomfortable and for me emptying the bag was preferable to a neobladder and all that it involved.   I empty the bag about every 2 hours. I know when it needs to be emptied as there is a pulling sensation and I keep my eye on how the bag is doing. Basil and I have been together since March.

Whatever you decide to do, I wish you a speedy recovery 

Inanna