Advice needed

Hi I’m a year and a bit post treatment and I still have occasional leaks. I use panty liners if I go out and have a ‘just in case’ bag. It has more liners, wipes and spare pants. Hope this helps.. it does get better. Good luck

Hi Dino, I'd wear disposable panties (or a liner if your leaks are minor) and bring spares and clothing changes JIC. I've never needed 'em but still have a bag of necessaries in the car!

Hope your outing is simply lovely! You deserve it.

Suz

At three months out I couldn't trust my bowels, so like the others suggested, I wore adult disposable incontinence pants.  I also find, even now, almost nine months out, I can't leave the house early in the day, I have to wait until I have had at least three bowel movements.  As you are going out for the whole day, can you find out where any and all the loo stops are?  The better you are prepared the safer you will feel.

Best of luck with your scan results - we all know only too well what waiting for those is like.

Irene x

Hey Dino,

Firstly congratulations on finishing treatment & being through the ‘other side’. Secondly I hope the scan goes well & I’ve everything crossed for great results on Monday. Thirdly the scanxiety is REAL!!! Lots of deep breathing exercises are definitely required around these times! 

I think in your situation, as already suggested, I’d go with disposable incontinence pants & a rescue bag, this doesn’t have to be a huge bag, I’d probably pop in a couple of extra pairs of the pants, some water wipes, a couple of bags (nappy sacks would do the job) so that if you do need to dispose of anything then you’ve got the means right there & a change of clothing for your bottom half, job done. 

It’s still very early days for you yet & I'm sure you’ll find the ‘leaking’ situation will improve as time goes on, you’ll also gain a bit more confidence each time you venture out but I completely sympathise with the anxiety surrounding that first time. Do you know where you’ll be going? Could you pre-plan? By pre-planning I mean mapping possible loo stops for your day? Although I didn’t suffer with the diarrhoea that some people do, when I needed to go it came with urgency & I didn’t have a lot of time to find a loo so I found doing this helped me find the confidence to go out more often. 

Once again good luck with your scan & subsequent results & I hope you have a wonderful, stress free day out next Wednesday. 

Nicola 

Hi Dino it is early days for you and I completely understand where you are coming from. It took me quite a while to feel confident when going out and would only go to places where they had good toilet facilities. I go walking quite a bit and even now at 17 months post treatment if I haven’t done my routine toilet needs before going out for the day I bought some period pants from Amazon and just use a liner inside. Luckily I haven’t had an accident but feel that these would at least help with minor leakage. They have a waterproof backing inside but you don’t feel or notice them. Plus they are washable. I have not ever worn the proper incontinence knickers but I am sure they would do the trick if you were a bit more unsure. I have currently been doing the FODMAP diet with the hospital dietitian and as I am a lot further ahead than you I have really improved with frequency issues and the odd blip but mostly normal stools (I have cheated a couple of times). I am much more in control and that is something we learn with time. You will get there and move towards a more settled routine and life. 

I'm five years in remission now, but I suffered with leaks, diarrhoea and getting caught out on a regular basis. I have just had a colostomy and wish I'd had it years ago. I didn't know I could have one and the surgeon said it transforms the life of people like me & he wishes more oncologists would refer patients in our predicament. My life is transformed, no longer do I shop where I know there's a toilet, I go for long walks and I teach horse riding to the disabled. I was in hospital for 2 days, no pain. I'm 4 weeks out of hospital, after 2 weeks I was back at the gym and also my dance classes. I'm 68 years old so no spring chicken! No more sore bottoms and awful washing!

What you are saying is exactly what I saw on a Youtube video of a Royal Marsden consultant who said, sometimes, people's bowel problems just cannot be solved by conventional means and a colostomy literally sets people free.  I am so glad that your life is so full and that you shared this.  Thank you.

Irene xx

Hi Just Retired,

I had a conversation with my oncologist surrounding incontinence, he knew I volunteered here on the Macmillan site & we seemed to have just had an influx of members with long-term bowel issues so I picked his brains & he said exactly what you’ve stated in your post that a colostomy can literally transform someone’s life. He said that people with long-term bowel issues should advocate for themselves & speak with their colorectal surgeon. It’s a surgery that before I’d gone through this diagnosis & treatment etc., would have terrified me but now I wouldn’t hesitate if bowel issues stopped me living my life the way I chose to. I’m so pleased this has given you your life back. 

Thanks for posting this. 

Nicola