Hi looking to connect with others who have had surgery and with a permanent colostomy bag

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Hi 

My husband had surgery on 30th November and is making a good recovery but we've been on the biggest roller coaster of our lives as we've been lucky never to have had any previous medical issues this has been very hard. We're ready to reach out to others who have been in our situation. 

  • Hi  and a warm welcome to the bowel page. Yes it is a huge shock isn’t it? I’d never stayed in hospital before this but I did feel that I was well looked after. Has your hubby finished treatment now? I found the finishing of the treatment and being sent back into the big wide world to stand on my own 2 feet again was one of the hardest parts. Sometimes, when the flurry of appointments and hospital visits finishes, it feels like the shock of what you’ve gone through finally sets in and that’s when the next stage of your recovery begins.

    Is your hubby coping with the colostomy ok? There’s lots of help and top tips on this page.

     Ileostomy, colostomy and stoma support 

    I’m glad you’ve found us here so please ask if there’s anything worrying you and we’ll try our best to help - we’re all at different stages of treatment and recovery and happy to help and support you both

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Thanks very much for your friendly welcome.  

    Thank god for the screening programme which is how it was picked up as he had no symptoms. The hospital and all the team we have had dealings with have been first class and they've been really supportive from day one. We've been on a steep learning curve but we were just living day to day and trying to take in all the information and my husband does feel that he has been very lucky.  As you say it's now a few weeks after the surgery that you start realising what you have been through.  I'm lucky that we have a very close relationship and he has talked about his feelings from the very start and we are in this together. Luckily he does not require any further treatment and will be monitored for the next 5 years. As far as the colostomy bag is concerned he has taken it in his stride from day one - purely because he was so sick after the surgery that was the least of his worries but he's accepted that it's there for life and is just dealing with it. 

    We will look at the group you recommend and any little things that he wants help with we'll definitely ask.

    Thanks very much 

  • Hi my husband had his surgery last year in May nearly 1 year if this disease and with a colostomy bag which he probably will have the rest of his live . Is been hard and is harder when aproching of a ct scan as we are afraid of what bad news we will have as the last one throw him from stage 2 to stage 4 . Now his on imunotherapy. Are your husband on any treatment currently how he is??

  • Hi 

    Thanks for your message.  Fortunately for my husband he does not require any further treatment so will just be monitored every 6 months for 5 years.  His cancer was stage 1 and as they have removed the lower bowel where it was they have taken it away.  I hope you get the result you want when he has the CT scan.  It's all very worrying and is a big strain on your everyday life but keep strong and do try and find time for yourself to do something you enjoy eg. Reading a book or a hobby to help you be able to switch off. It's very hard but you need to be strong for your husband.  Sending you all my best wishes 

    Cath

  • I have had a permanent colostomy since 2021 as a result of rectal cancer.  A charity I have found particularly helpful is Colostomy UK.  It might be worth looking at. 

    I know what a shock and a rollercoaster it is and wish your husband all the best.  I have reovered well from my surgery (which also involved a Barbie Butt) and find it is possible to live a virtually normal life and do what I want.  I had my surgery when I was 70.