Rectal cancer

Hi David,

Welcome to the Group. It will definitely be a very anxious time for you at the moment with your surgery looming ahead. I had my AP resection and permanent colostomy in 2012, when I was 46 years old. You need to prepare for after your surgery - the best advice I can offer is to listen to your body. You'll go from being pretty fit just now to more or less being dependent on others for simple day to day tasks, but your body does need to recover from this major surgery. Have a think about how you will spend your time when you come home from hospital - you will be very limited as to what you can do, physically and mentally. So be prepared! Over time it will get better! 

As for your colostomy - I didn't even know what one was until I was told I was to have one. Don't worry about it - of course it's life-changing, but it doesn't have to hold you back. In the early days your bowel will still be trying to settle after the surgery, so it might take a bit of time. It will be a big learning curve, but it will become second nature to you! When my bowel had settled it seemed that I spent my life sitting in the toilet with my stoma with endless pouch changes. You will get into your own routine, and find out what works for you. In the early days I was on laperomide to slow everything down, and was also on jelly babies and marshmallows to firm up output. To say it's a rollercoaster pretty much sums it all up!!

I'm now almost 7 years post surgery, and have been back at work full-time since 4 months after surgery. I changed employers 5 years ago and no-one in my own office (with 10 other staff) know that I have a colostomy. I go to the toilet like everyone else, and pouch changes can be done within a few minutes, but I don't rush as I want to make sure that everything is sorted out. What I will say to you is that if you can, ask your stoma nurse about irrigation - this is a way of washing out the bowel and does give you back some control. 

So, just listen to your body, and do what feels right for you. Remember that your medical team are all there to help you - don't be shy in asking them for help. And don't forget your family and friends - they will want to help you too, and not only is it good for you, it's good for them.

Hope all goes well for your surgery, and if you've any questions you want to ask, just ask! We're all here to help if we can!

Linda :-)

Hi ,

If you haven't done so already, be sure to join our Ileostomy, colostomy, urostomy and any other stoma support. I was only a temporary ostomate, but our resident expert and the rest of the group members are always on hand with advice.

Regarding bag changing: In hospital after your operation, the stoma nurses will start off changing the bag for you, and of course teaching you to do it yourself. I will encourage you to take every opportunity to perform as much of the bag change yourself during that time. Get as much information from them about different types of bags, flange extenders, adhesive spray removers, barrier film and all sorts of wonderful bits of kit that makes an ostomate's life a little bit easier.

As for the leaks, they do happen, but as long as you keep an eye on how full your bag is, they tend to be minor inconveniences. I tended to find that if I wondered whether I could smell the bag, there was no leak. Once I DID smell the bag, found a leak and a quick 10 minute change sorted it without anyone in the office being any the wiser.

Let the colostomy be the least of your worries! Think of it as the thing that will save your life, and you will be surprised at how quickly it becomes part of everyday routine.

All the best for the surgery next week!

Yolande

Hi,

Please don't be scared. I had it in mid November 2018. It's never leaked, easy to change or empty as I have one you can empty. Just listen to the stoma nurse. My bowels resumed normal service! within a week of the operation and the bag fills up after I get up in the morning ... usually. I used to take a spare bag, wipes etc with me when I went out but not now. Possible disadvantages are 'fartiing' noises from the stoma and sometimes smells. I and others close to me either find it amusing, as I do, or ignore it. I eat anything and everything, curious to see what we don't digest!

My regards .... btw I'm 74

Had my surgery several weeks ago.Everything went really well and surgeon very happy.Got my pathology results last week and got great news.All cancer gone (it was T3 N1 in December) After undergoing chemoradiotherapy feb/mar it had reduced to T2 N0.Surgeon told me that all rrmoved and after consultation with other doctors etc,believed that no further treatment was necessary in my case.I dont have to see surgeon until next year for colonoscopy.Thank God.Am just beginning few months recovery at home now getting to grips with stoma.Small price to pay to be cancer free.

Hello David, I’m 41 years old female and just have a diagnosis of rectal cancer, they put Ileostomy first for me, I became very ill after the operation, I’m getting better now, my chemotherapy and radiation will start soon, then they will operate to remove my tumor and bowel, they have said they can reverse my stoma, is your stoma permanent? 

Hi

Yes my stoma is permanent but its not causing me any problems (it is early days though)

I have heard from a lot of people that they rue the decision to go down the reversal road.even nurses in hospital said this but each to their own

Hope all goes well for you.i sincerely believe that only being in your forties will help your recovery 100% (it has mine so far)

I hope so too, want to get back to work and be normal again, hating my life at the moment, 

Hi David,

I guess I am a year ahead of you down the road. I ended up having a colostomy and a urostomy so I am a "Double Bagger".

It is now 8 months after my surgery and I can report that I feel well and have regained my fitness and no evidence of disease. I find having the bags only a minor inconvenience and rarely get any leaks or issues. 

You will soon get used to life with a colostomy. If I can manage two bags, you can easily manage 1 bag! Try out several types/makes of bags and choose the one that works for you best. The ones I had initially didn't work very well for me but the new ones are brilliant.

Good luck for the Op and beyond.