Colostomy Refusal

Hi ,

What a sad story and as my mum is a stage 4 patient I too wish for him to avoid all that she had to endure ( she is doing very well.) 

If it is something he can’t get his head around he might like to look at a second opinion . Some patients consult with a Papillon practitioner . You could read up on that treatment . Or a second opinion with an oncologist to look at how to control the disease .

So much fear and I wonder if he had the opportunity to speak to someone who is living a good life despite a stoma might be an option . However we also have to respect his wishes .

Great of you to try and find another way .

Court 

Thanks Court. So good to hear your mum is doing well. I have followed your posts and history with interest, awe and amazement at your continued contributions and knowledge. I bought Ken the Saving My A*** book which covers Papillion when he was first diagnosed. Wife Pam read it but says he won’t. Pam apparently asked his Consultant at the start but was told he wasn’t a suitable candidate for IM determined to keep looking.

https://www.nice.org.uk/guidance/ipg532/chapter/1-Recommendations

Hi Topsymum

Thank you so much that was a very kind thing to say and I deeply appreciate it .

How are you keeping . I see you are in a watch and wait pattern ? 
I have included the Nice guidelines as section 1:2 might cover him and it might be something he wants to speak again about with his team . I am sure @KevH had radiotherapy first then Papillion .

We have had a few people over the years who have wrestled with having a stoma . 
But I guess we have to accept the boundary he has given .

Great that you are helping .

Court 

Hi Court

I seem to be free of any cancer symptoms  but am struggling with inflammatory arthritis as I am no longer able to take the Naproxen with a reduced kidney function. Being in lockdown means I don’t get to see my GP  but I am coping on a slow and steady basis.

Pam says that they are waiting to hear from the consultant how big the tumour is following radiotherapy and chemo. They hope to discuss Papillion if the results are favourable. Another watch and wait. Thanks again for your helpful advice. Will let you know what happens.

Hi Topsymum

Great to hear you are coping well . I too take naproxen but I understand the whole kidney implications . 

This man has a lot of caring people around him . I hope he finds a way through this .

Fear is a horrible thing .

Have a good day .

Court 

When I was diagnosed and was given my treatment plan, the resection seemed to me to be the worst part of all. Then I thought about my life and how much i wanted to live it and decided to go ahead. It has never seemed as bad as I imagined it would be. As long as you are careful with diet and take your time when changing your pouch, you can keep problems to a minimum. I guess surgical techniques have improved since your friend's father's day too. Please persuade him to read some success stories - I live a full life, travelling when I can, enjoying my family and friends, walking, cycling, theatre- it just hasn't stopped me doing what I want to do. I wish him well whatever he decides.

Thank you for that Vetrep. He is just unapproachable at the moment. I think the turning point will come when he receives his consultant’s observations in writing. It is kind of you to advise. I will try to broach ideas when he is more receptive but so good to hear of your experience and how well you manage life. Keep safe!

Hello, 

Last year, almost to this date, ( Cancer birthday 16 Feb 2020) I was diagnosed with bowel cancer.

In the start-up to the pandemic, my surgery was delayed. Initially, it was going to be keyhole but was changed to a full unzip of the stomach and a stoma fitted.  It took some getting used to having a bag dangling down your side and yes there have been some accidents, mostly in the home, fortunately.    I started chemo but after 2 cycles stopped, due to health reasons. I returned to teaching in September 2020. Have to wear loose-fitting clothes.  Also a change of clothing, just in case in a school bag. The bag did make an appearance during a pe lesson and I explained to children what it was and why I had a pooh bag. We all laughed it off. Children knew I had been in the hospital for cancer.  I am due to have a reversal, in the near future.

Managing the diet was the most difficult part, I found. I love vegetables and baked beans,   Not anymore. LOL

I find talking openly about having a stoma helps and most people have a good opinion of my physical and mental state.

Stay strong

Phil

Hi Phil

Can I ask why the changed your op from keyhole to open? What did covid have to do with it? I’m waiting for full open surgery with a possible stoma, I was never offered keyhole. Is it as bad as I e read basically I’ll feel like I’ve had a fight with a bus. I’m petrified. How long before I can even walk again? Thanks x

Hi, Phil,

Thank you so much for sharing your experience. The right frame of mind along with the right diet seems to be the way to manage a stoma. As it’s my friend’s husband who is having his doubts I have decided to close the subject on here. He is determined not to discuss options and obviously it is not my place to persist with advice. He will make his decision when he receives the consultant’s findings re size etc. Sadly I feel it is a foregone conclusion on his part but who better to decide what road to take than him? I am so very pleased that you seem to be going from strength to strength following your op and wish you the very best for the future.