Hello, apologies if this is the incorrect forum, but this is where it began for me with prostate cancer in 2014.
I had an AUS fitted in 2018 which had to be removed within a few months due to my urethra eroding.
I have been using an SPC for the last three years and now my urologist is suggesting that an ileal conduit might be the way forward for me.
Does anyone on this forum have any experience of an ileal conduit?
Hi George,
Last September my husband had an ileal conduit urinary diversion and although it was a very last resort after his urodynamic evaluation for an AUS was unsuccessful and after much 'emotional' resistance to the idea it has been an amazing success. It has provided a significant improvement in his QOL enabling him to do many of the just basic everyday activities, visiting family, eating in a restaurant etc that became impossible once his sphincter became damaged following radiation damage coupled with a severe bout of flu while we were overseas. It has avoided many embarrassing accidents, wet beds, etc and has meant he no longer is constantly wet.
Although my husband had other complications the operation was done via keyhole surgery and he had been expected to be home within under a week. This didn't happen but nothing to do with the surgery specifically. The surgeon did say the operation, because it involves bladder removal and taking part of the small intestine and other intricacies is one of the most complicated of operations. It is performed many times though as some people with bladder cancer require it.
I change the stoma bag every second day, though many people on a different website mention they do it less often I find it's very easy to change. Probably takes me all of seven minutes. He's perfectly capable of changing it himself but I've always done it since he came out of hospital and I think he prefers me to do it. The night bag is a real bonus and just easily attaches to the stoma bag and it enables him to sleep through the night something he hasn't been able to do since his initial PR in Nov 2015.
In Australia (not sure what how you are placed in the UK) Medicare provides all the requirements free of charge and the supply are extremely generous. You put in an order each month for what you want including garbage bags, wipes of different kinds, stoma bags, overnight bags, stoma powder, adhesive removal etc, etc, and it's delivered to your door. The only cost is delivery $13 mth. I never use everything I receive nor do I need what's available to order.
Please message me if you'd like to know more. You can find my husband's profile if you click on my name. He's had a very rough journey but only last week we had a Zoom meeting with a Professor about a trial for his prostate cancer and the conversation started with him saying it was unfortunate my husband had needed the stoma bag and this statement caught us by surprise as it's been one of the very positive outcomes...one no doubt you'd avoid if you could but with no alternative. Definitely a great success.
I wish you every success too in your deliberations. Don't hesitate to contact me if you have any other questions.
Regards, Marnie
ps...There is a lot of information on a forum like this one 'Bladder Cancer Advocacy Network Community'. It often has tips about management once a person has a stoma bag. I find it a bit overwhelming but there are practical tips and shared experiences. We have a lot of local support here from the Stoma Nurses at the local hospital we attend.
Hello Marnie, thanks for responding.
Your husband really has had a hard time, it is amazing what the human body has to endure. I hope that the ileal conduit continues to have a positive effect.
My gut feeling is that I don't want to have an ileal conduit, but basically, I don't yet know enough about it to really make a proper judgement. My wife and I are awaiting an appointment with a Stoma nurse which hopefully, will provide us with some answers.
I tried to find the forum you referred to but there seemed to be a lot of them with similar sounding names and with different origins.
Thanks again for your reply.
Cheers.
Hi George,
This is the link to the network but if you do have a look at it don't be overwhelmed as many of the people who post and ask questions don't seem to have had the support that we had from the stoma nurses that I'm sure you will have too and also many seem to not be long out of hospital.
One thing I forgot to mention, and you may not have had this problem, but my husband while incontinent constantly had UTI's that required repeated hospitalisation for intravenous antibiotics and it is only recently that his CRP has dropped to the normal range in the past 5 years. When he was deliberating about the stoma bag, his infection control specialist told him he would never be free of the infection while he was incontinent.
I know how you feel about the stoma bag and it's exactly how we felt. There are some other less intrusive alternatives but when we checked them out, given the AUS wasn't an option, for him the ileal conduit seemed like the best alternative and the specialist who was advising us thought nothing else would be successful.
You and your wife are doing everything right by taking the time to make sure the decision you are making is right for you...no one can make it for you.
Keep in touch and let me know how things go....whatever decision you end up choosing I hope it works out as well as the stoma bag has for my husband.
google.com/search?client=sa...
Hi Marnie, Thanks for your advice, I welcome it.
I tried following your link from your message but it just opened a Google search page with several sites shown.
Is it the Inspire.com website you are pointing me to?
Cheers.
My pleasure George. Glad to share our story if it helps add another dimension to your deliberations.
Sorry about the link but each link I try to send is problematic maybe as I tend to stay logged in to sites. Try this one... and yes you're right it's the Inspire site..
corp.inspire.com/meet-inspi...
Regards, Marnie
The UTI’s can be hell .
I have had a sphincter failure for the last 6 years and have had an SPC since then. One urologist wanted to perform a Urostemy and fit me with a bag, but a second opinion supported my preference to stick with the SPC.
The SPC has worked brilliantly for me. It has virtually no effect on my normal life which includes a vigorous game of golf twice a week. I am also in Australia and the catheter is replaced every 5 weeks. That is an uncomfortable process but apart from that I barely know it is there. I was warned that there was a risk of infections, but apart from a couple of minor issues, there have been no real problems over the last 6 years.
I still have an aversion to the bag and will resist it as long as possible, but of course - horses for courses and if it works for you, then that is good.
Chas
Hello, and thank you for your response. Like you, I manage with the SPC and apart from the odd infection (3 or 4 since 2018) it works fine.
Here in the UK it seems fairly common practice to replace the SPC every 11 or 12 weeks, so the uncomfortable process (yes it is) doesn't happen so often. My initial feeling is that I don't want to have an ileal conduit, but basically, I don't yet know enough about it to really make a judgement.
Hopefully, that will change. Thanks again.
George, interesting re the extended period between catheter changes. May look into that a bit further. Would be very happy to halve the number of changes!
Do you know why your urologist is suggesting the ileal conduit? What are the benefits over the SPC? I would have thought it would be harder to manage, but don’t have any experience to justify that thought.
All the best, Chas
Hello Chas,
The catheters which I am using are marked as "Long-Term (up to 12 weeks use)"
The GP surgery once attempted to send me a different catheter which I noticed was marked up as being only for use for something like 30 days (from memory) so obviously you would need to ensure that you have the correct one which is suitable for long term drainage.
I believe that my Urologist has suggested the ileal conduit just because it would keep me totally dry.
My urethra totally eroded because of the intense course of Radiotherapy Treatment which I had in 2014 for the Prostate Cancer. It is also believed that the damage was probably made worse by the cuff of the AUS, which is a shame because whilst that was working, it was marvellous, truly life changing.
I have the SPC because the urethra is more often than not, totally blocked because of the erosion, and the SPC allows me to pass urine. Sometimes, the urethra seems to temporarily unblock and allows an amount of urine to leak out.
This might be a small amount or a large amount over which I have no control and I have to use pads again. I will also revert to a penile clamp for a few hours a couple of times per day and this in time, tends to leave my urethra blocked again, so I can cease with the clamp.
As yet, I can't really comment as to the benefits or otherwise of the ileal conduit versus the SPC, but I know that apart from the odd UTI, the SPC is not bad at all.
To be honest, I'm not sure if I am ready for an ileal conduit yet. I will wait and see what the appointment with stoma nurse will reveal.
Cheers.
George, thanks for the explanation re both the catheter and your condition. Will explore long term catheters. My goodness you really do have the worst of all worlds, a retention AND a leak. I was briefly like that, had difficulty passing urine, but did pass a little with no control. I eventually seized up completely, so the SPC provides a very satisfactory solution, and I don’t have to worry about any degree of incontinence.
You have my sympathies and I can see now why your Uro has suggested the urostomy. Difficult decision for you.
My very best wishes, Chas
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