My rectal cancer journey 16 months on after treatment with EBCRT and Papillon

Hi, sorry to hear that you've found yourself in this position, ive just had an APR about 3 weeks ago, its a big operation but with the right care and recovery, you can get through this

I asked almost the same, had anybody had and experience with this type of surgery, one of the best bits of advice for me, was to get a decent pregnancy pillow for when you get home, absolute gamechanger and sooo glad I've got mine!. Also people mentioned to try and do some nice things if you are able to, day out or a nice meal with friends and family, it's about having some nice memories to recall and help you through the hospital stay

If nothing else, the pregnancy pillow is the one, it really does give comfort, hope you find this somewhat helpful 

Thank you so much for the reply and advice.  It helps a lot hearing from others who have gone through this.

Hi Powder

I have just had an ileostomy and proctectomy after having Papillon treatment last year with Prof Myint. I was lucky that my tumour had gone after the 3 treatments.

But my trouble started with the 3 monthly colonoscopys/sigmoidoscopys and I was losing control of my bowels so it was decided that I would have the op.

The stoma isn't a problem to be honest, I am managing well. But the proctectomy is proving troublesome as I am very slow to heal after the radiotherapy I had last year.

Having said that I do feel positive,  as my surgeon said, when the site of the cancer is removed,  it can't come back there.

I would advise to relax as much as possible before the op. Eat all the foods you enjoy , as if you have a stoma there will be things you can't eat, and until the stoma works properly you'll be eating yoghurt, jelly and ice cream which is so awful after a couple of days. I've completely gone off sweet foods after 9 days on those things.

Wishing you luck x

Thankyou MyNorfolklife.  Good to here your positivity in managing the stoma

Hi Powder, I cannot really advise you how to get in shape before the Op, but I think I was pretty fit beforehand, just walked a lot. Well to be honest it sound pretty good that your cancer remains within the bowel wall and has not spread, that was what happened to me, and mine is a positive story.  I had the op nearly two years ago, I was left with a stoma, which I do not have a problem with whatsoever..(In fact I am in Spain at the moment so does not stop me doing anything I done before).  But I can emphathise with you, I know how hard it is waiting for the op, and wondering what the future holds, but try and stay positive, because most of us recover and live our lives to the full, as you will.

Hello MaryChar2046

Thank you so much for sharing your experience and life after the Op.  This has helped me focus on having a positive outcome rather than just focusing on the negative aspects of the operation.  I really appreciate it.