Incontinence

Hi and welcome to the board. Yes it is early days and things do improve over time but it is very trying in the early days. Do you do sphincter exercises? There’s a good description on pages 24 & 25 in the booklet below

https://bowelcancerorguk.s3.amazonaws.com/Publications/RegainingBowelControl_BowelCancerUK.pdf

Im also going to attach a link to a talk given by a gastroenterologist which a lot of people have found very helpful 

 Regaining Bowel Control

You can take up to 8 loperamide a day but be careful not to go to the other extreme and find yourself constipated. 

Hope there’s some useful advice amongst all this 

Take care

Karen x

Hi Karen,

Thanks very much for the reply.

Yes, I'm doing pelvic floor exercises and they're getting a good daily workout as I walk down a big hill with my dogs trying not to have an accident...

The video is excellent. Early days it may be but time to go to my GP and try to get a referral to some people who can give me some advice I think. I know the gastroenterologist who'll do my first surveillance colonoscopy in mid January and will also chat to her.

All the best

Ollie

I agree with Karen.  Do not be afraid to get they loperamide dose right up there.  Maximum on packets usually 8 a day but use them to get the result you need. Even if that is 12 a day. ( pharmacist here) 

another good anti diarrhoeal is codeine if your Dr agrees but that comes with it’s own issues.
don’t be afraid to experience with dosages.
 

Thanks for the advice. I was taking 5-6 per day. However, this seems to exacerbate 'clustering'... It slows down the transit for sure, but I end up going to the loo very frequently and passing 'droppings'.

I dropped the dose to three loperamide/day 5 days ago and, if I strictly control my diet, this seems to work reasonably well. I'd rather control bowel function more naturally and use medication to finesse it. I also suspect that, if I'm not maxing-out on loperamide, it'll probably be more effective when I do need to increase the dose if I'm going out etc.

My real issue is the inability to hold anything in; incredibly humbling...

Hi Cham

Your note is one that I probably wrote myself 10 years ago (almost to the day). Like you, my cancer was low down, and like you I initially had very little control. This was compounded by my bowel not creating proper stolls, so everything was very loose and with very little muscle I struggled to control things, and yes, 20 times a day sound familiar.

Here is my experience. For 6 months I tried to analyse why I had some good days and some dreadful ones, with careful analysis of what I ate and when. All totally useless in my case, I never really got any proper insight.

And for 6 months I considered requesting the return of my bag to get some life back.

But, gradually, almost without me noticing, the improvement in my control and the creation of more normal stolls occurred, just like your surgeon said. I am glad I resisted the temptation to revert to a bag (but I know a number of people who have been happy for years with a bag and who live a more reliable life than I do).

I gave up golf, as I still cannot be predictable enough to be away from a loo for 5 hours, and I have replaced that with walks and hikes, when I can vary the time to suit my situation that day - so I would be optinmistic about your running, maybe not just a marathon with a fixed start time, for a while.

What I have learned is the foods that give me the most reliable life. I had a revelation when I holidayed in Greece. Suddenly after a week my system was perfect and I realised that the Greeks use no spice at all in most of their cooking, and since then I have re-learned to cook with herbs and remove all spice and things are much more settled. I do however have incontinent accidents occassionally, I just dont treat them as a drama and get myself sorted out quickly.

I got my first all clear 10 years ago - last night we had a sleep-over of our 3 youngest grandchildren, all under 10, so I never forget to bless the surgeon and the brilliant nursing staff who got me through the initail treatment and the monitoring over the years.

My very best wishes with your "new normal" - I hope you will have a wonderful life, whatever minor limitations and changes that you may have. Enjoy the day!

Hello Greg,

Many thanks for taking the time to write. It's very much appreciated.

I am having some success with my diet, and it has the ability to really make a day a lot better. That is reason to be grateful, even at such an early stage. I spent years flying longhaul to India and eating my own bodyweight in curry. I'm glad that I made the most of it!

I'm delighted to hear that you regained some control; it's a beacon of hope at this end, albeit almost impossible to imagine at the moment.

I get up an alp every day with my dogs which keeps me sane, and accept that the gravity-assisted descent will be a little emotional and currently at a walk, rather than a run...

It's been very cheering to engage with others on this subject. I've always considered myself as mentally strong and bulldozed my way through chemo, radio and surgery, probably distracted by still being a busy father to 3 children. This experience, however, is pretty intimidating and can be quite lonely. Sharing your experience is a great help. Thank you.

Happy New Year

Ollie

Hi Ollie

I found this board really helpful, I thought your post was great because I think getting back control is difficult and a very common problem that is not discussed enough, even on this board.

Just one final point. I was proscribed all sorts of stuff and like you say you solve one problem and develop a different one.

I took the decision to stop every chemical solution. It wasn't an instant solution, and going to the toilet was a painful exercise for ages just because of how often I was going, but I think at some point you have to have faith that your body will adjust and at some point the tablets get in the way of that (just an opinion, I don't know if any decent research on coping with the after effects of this major surgery)

One thing I did look at was one if those Japanese paperless toilets. Didn't get one and when I have a bad couple of days I sometimes regret not doing so. You might want to look at that if your frequency goes on beyond a few weeks. Just like an aggressive bidet loo!