Anyone with two bags (urostomy & colostomy) - how bad is it?

Hi Babotie 

Yes, I have a permanent end colostomy and a urostomy. I had a different cancer, and would have been able to save my bowel but actively chose to have it removed in the hope of reducing the risk of future recurrence for me.

I have never had a urine infection, and never had a kidney infection. For me personally, I would not have wanted to live with a fistula or incontinence of any sort, so I’d rather have 2 bags than that. I know how much friends have struggled with fistulas and incontinence and how tough they find it. I got my two stomas at the same time, so only know what it’s like to live with 2 bags, but to me, I thought I might as well have 2 as have one! My priority was removing my cancer completely, which happened for me although I didn’t have bladder cancer either! 

I love not having to get up in the night to go to the loo and I find 2 bags very straightforward to deal with. I’ve not regretted my decision to have 2 stomas, have never once been admitted to hospital with problems with either of them or had any issues requiring any sort of medication or intervention.

I’m now past my 5 years from surgery and my surgeon considers me cured so it was worth it.

May I ask what bothers you more about having a urostomy than managing a fistula and incontinence? 

Sarah xx

It's your choice but if I were you I'd do it. 

My tumor invaded my bladder causing a fistula between my bowel and my bladder. I don't know how bad your fistula is but I was literally peeing poop. I became urine incontinent so I was leaking poop all the time. I could never get clean. I had a diaper rash that would not clear and hurt so much I could barely sit. 

I had TPE surgery that left me with 2 permanent stomas. I won't say having 2 stomas is easy but it was a huge relief after all the suffering pre-surgery. I wasn't given a choice but I have never regretted my outcome. 

Your fistula may not be as bad as mine... yet. But this is a possible consequence of living with the stoma. 

Meanwhile, once you adapt to the stoma, life goes on pretty much as it did before. Urostomies need emptying more frequently than colostomies. But the night bag is awesome, no more getting up in the middle of the night. 

I sound a bit like a commercial for 2 ostomies and I don't mean to pressure you. But it was such a game changer for me. 

Hi Sarah, thanks that's such a helpful response. The only person I know who has had a urostomy is a friend of a friend - he has had 6 kidney infections with his bag. So your reply is really helpful. With the ileostomies (temporary) I've had, the last one was troublesome - leaked and skin around was a constant issue. So I'm sort of assuming I'd have similar problem with a urostomy bag. But that's smaller concern, the real concern is I don't want to spend time in A&E etc with infections and other complications. My cancer is uncurable and it feels like a 'known evil' is better than an 'unknown evil' in terms of 'wasting'  whatever time I have left in hospital with issues and complications. So suppose that is why I've been leaning to the simpler surgery. I was thinking it would generate less medical issues. You've however clearly had a good outcome with your bags. You've given me a lot to think about - thank you so much for your helpful response. 

Hi Sarah, thanks for sharing, that's very helpful. Sounds like you haven't had any medical issues with the urostomy - like infections etc. That's encouraging! May I ask - how often does one end up emptying a urostomy bag? Someone said to me it could be every 1 to 2 hours....is that about right? thanks

PS you the first person I've 'spoken' to that has had a fistula, I have felt very unsupported and on my own with it - thank you for sharing. Glad to hear you in so much better space now. 

I’m glad my response gives you some perspective. I have had the odd issue over more than 5 years with sore skin-extremely rare- but that was resolved by changing to a different type of bag and ensuring that the hole in the bag was correctly measured. There are dozens of different products available which you can try to get the most suitable one for you, which make managing a urostomy very simple.

I’ve never been to a&e with a urostomy issue because nothing has happened to me in terms of any kind of infection or other issue-not once-so please don’t assume that infections are rife or that a urostomy automatically means you’re likely to have issues requiring being in hospital. I’ve not needed to see my urology surgeon since 2020 when I had my TPE. 

I can understand you wanting a simpler surgery, but after you recover from a urostomy, your fistula and incontinence  difficulties should be sorted out permanently.

I empty my urostomy bag around the same amount of times in the day as I used to go to the loo when I had a bladder, so it just depends on how much you are drinking. A bag of urine is heavy, so I empty it regularly-just go to the loo and release the tap at the bottom of the bag to empty and that’s it. It takes no more time than a normal loo visit! 

At night I connect my bag with a tube to a larger night bag which holds 2 litres of urine and that’s enough capacity for me not to have to get up when I go to sleep. It has never leaked! 

I appreciate that you are living with incurable cancer, and I was given a 30% chance of cure with my surgery so our situations are different. However, I have several friends who have suffered in the same way as Susan did leaking poop etc, who weren’t able to have urostomy surgery and were desperate for it but their cancers were too advanced. One of them ended up completely bed bound and in constant discomfort.

I hope you’ll give it serious consideration, as it really could transform your life and make you so much more comfortable. If there’s anything else you’d like to ask about it, please feel free. 

Sarah xx

I empty my bag every 1 to 2 hours. But as Sarah says,  it's a simple thing. I do it standing up and it is very fast. 

I had my surgery last Aug, so just under 9 months ago. I've had no infections or problems with my urostomy. I should point out that a rectal-bladder fistula greatly increases your risk of infection. It's a conduit for bacteria to enter your urinary system. 

I've met (virtually) a few people with fistulas. But it seems to be an uncommon complication and you're the first I've met with a rectal-bladder fistula. So I completely understand why you'd feel isolated. The minute I saw your post, I knew I had to tell you that part of my story. 

You are not alone. And I have so much sympathy for your very difficult situation.  

So kind of you both helping me like this. Really appreciate. A last question - does your urostomy bag ever leak? - I read a blog and this chap was saying if you go out always have a spare set of clothes with you in case the urostomy bag leaks. Eeek. I'm presuming because urine is of course fluid compared to a more 'solid' poop the risk of a urostomy bag leaking is greater than a colostomy/ileostomy bag?...do you mind sharing your leak experience. thanks!

Yes, it can happen but certainly for me it’s very rare, as I use additional adhesive to seal the bag to my skin, and adhesive strips around the bag.

If I am going out, then I always carry a bag of spare stoma supplies as I may need to change either bag. It’s second nature now to me to bring a spare set of clothes as either of my bags have the potential to leak/burst and it’s just about being prepared for any eventuality!

I can have pancaking with my colostomy which can push the bag off my skin, or occasionally my bag can fill very quickly so I need to change it when I’m out. This can be messy so I’d rather take stuff with me to have confidence I can deal with the situation instead of being in a mess. 

Without a bladder, urine can’t be stored inside me so it has to come out but leaking is not by any means a major issue. I cannot remember the last time it happened either during the day or at night. My father in law has a urostomy and has never had any leaks.

Sarah xx

Thanks for saying that Sarah13 appreciate. And that's good to hear on your lack of infection.

My (botched) bladder surgery when fistula formed was January last year. From there I had multiple infections and eventually sepsis but always only when I had a catheter in, otherwise no infections. (Last year they tried to 'heal' the fistula by giving me a catheter for 8 weeks). This year however I have had two kidney infections without a catheter in - they can't explain why the change, bar I had stopped taking oestrogel and that can help protect against infections. So difficult to judge if my infection risk is increasing. Argh.

Thanks for helping me. I know its stupid but I struggle with the idea of two bags on my tummy & being like that permanently. If it was a curative situation, I would be ok with two bags. (Benefit would outweigh everything). To make this decision in a non-curative (elective) scenario I reckon I need to balance the benefit to downside...what you both have said is really helping me think about the urostomy bag in a better way, it not as awful as I had in my head! 

Thanks Sarah