Anyone else experienced incontinence a year after treatment?

Hello LCraig,

Good to hear from you but sorry that you are having such difficult issues. I remember that you had a hard time with treatment. 

I can’t really advise as haven’t had any urinary issues but can identify with the late effects of bowel control and have found it hard to get any guidance on this other than this forum.  This must be really distressing for you and I am so sorry that you have this to contend with. I think pelvic radiotherapy can have many late effects.

I know from other posts that some members have had changes to frequency and ability to pass urine post treatment and hope you can get some helpful guidance. 

Sending hugs xx

Hi LCraig ,

Firstly I’m really sorry that you’re having these issues, it must be very frustrating.

I had an appointment with a nurse practitioner at my GP’s surgery a year or two ago about something completely unrelated & we got talking about my diagnosis & treatment, I mentioned that my pelvic floor seems to have weakened since my treatment so if I need a wee then I have to go as holding it is more difficult these days, she asked if I was aware that the NHS ran a bowel & bladder service where anything like this can be addressed, I had no idea! I didn’t access the service as I manage ok at the moment but in your position it’s something that would be worth you looking into do you think? A quick call to your GP’s surgery or a telephone appointment with either your GP or practice nurse should get you the information you need or I’ve just googled my local health authority with bowel & bladder service tagged on the end & full details have come up on where they’re based, how to contact etc. 

I hope you manage to get some help, let us know how things go. 

Nicola 

Hi Nikki and PEB24,

Thank you both very much for your replies. I always appreciate what you have to say and it is always comforting and reinforcing.

I felt very low the day after my latest bed wetting but I feel better now, time heals.

I have taken some simple and practical steps to make sure that if, probably more likely when it happens again, that it is easier to manage. I have now got a waterproof duvet cover that goes under the normal duvet cover and I have now moved the water proof  mattress protector to above my padded mattress protector. Both are flocked so as not to cause over night sweating. This means cleaning up will be easier and less erroneous. Emotionally I hope this will be easier.

I will also wear a pad overnight when I am staying overnight at a hotel or holiday cottage. This does not need to restrict my life.

i also now carry a spare pair of pants in case of poop accidents when I am out and about wear a small pad of I am going on a long journey in case of peeing accidents.

I have also done some thinking about my shame response to this and this is where this site helps because I don’t feel it is about me doing something wrong or being bad. Bed wetting is something my parents shamed me out of as a toddler.

I have an appointment with my oncologist on Wednesday for my annual review and I will discuss this new isue with her then. I suspect that the outcome will be a referral to the bladder service, which will be helpful.

I feel more sanguine about this now. I had forgotten this might be a late side effect and I had become complacent. I am trying to appreciate that this could all be so much worse.

I have also realised, again the importance of this site and how staying in it, not just for me, but especially  to offer other sufferers and survivors support is the most helpful kind and unselfish thing to do. So I will now try to be more present for others as you both are.

Thank you both, again for giving me your time, wisdom and support.

Neil.

Hello LCraig 

This must be difficult for you, I am so sorry that you are having these side effects.  The radiotherapy, whilst mainly doing a wonderful job of curing the cancer does have quite unpleasant after-effects for some people.  Nicola has highlighted a service that may be very useful for you.

I had urgency first thing in the morning but managed to cope as long as I waited until I had had two/three bowel movements and I was completely 'empty'.  But I had severe anal stenosis and because of my problems had an elective stoma.  And my bladder definitely isn't what it used to be, I can't hold urine for any length of time and find myself visiting the loo four or five times during the night.  And I think I possible have stenosis in the uretha as I dribble and pass urine in fits and starts.

I would definitely find out if there is one of these specialist clinics near you, and make an urgent visit to your GP in case you have to be referred. 

The very best of luck, and please do let us know how you get on - I am really interested in what they suggest.

Big hug

Irene xx

Hi again Neil (LCraig ),

You certainly shouldn’t feel any shame about what’s happening at the moment although I can understand the regressive feelings if you felt this way as a child. Hopefully this too will pass. 

I totally agree also about what you say about finding ways of easing the emotional burden of the longer term side effects, I think we forget that life after a being given the ‘all clear’ becomes as much of an emotional battle as the physical one of diagnosis & treatment. Not thinking about the challenges we face isn’t about becoming complacent though it’s called getting on with your life. 

The bowel & bladder service I was informed about is self-referral although I’ve just thought maybe a check for a urinary tract infection may be an idea although I’d expect added symptoms if this was the case. 

I find even 8 years on from my treatment I still learn things from this forum & hanging around here is just my way of paying a little forward for all of the support I received when I was at my lowest.

Nicola 

Hi LCraig - these forums really are brilliant in helping me realise I’m not alone!  I finished my radiation and chemo treatment for an anal tumour in late November last year and this week had my first post treatment scans. I haven’t had the results yet, but I am having real issues with my bowels. Like some others, it’s mostly urgency in the mornings and I need to go about two or three times in quick succession - whether or not I’ve eaten. Needless to say, it makes me extremely anxious about being out of the house in the mornings. I’m waiting to see my surgeon and radiation oncologist but I’m wondering whether seeing a dietician would be of any help. So interesting that the effects of radiation can actually get worse rather than better as time goes on. I also find that I don’t have much sensation when passing stools. It’s all very anxiety inducing! But there are some extremely positive people on these forums and I’m determined to become like them!