APR advice needed please?

Hi Char Cad , 

Firstly welcome to the Macmillan Online Community. I’m really sorry to hear about your ongoing diagnosis & that you’re facing APR surgery, it must be a very unsettling time for you.

I don’t have personal experience but we have had several people on the forum that have had successful APR surgery in my time here. Hopefully one of them will see your post & come along to offer you some reassurance. It is a big surgery with a lengthy recovery but if this is what it takes to rid you of this damn disease then it’ll be worth it. 

Nicola 

Many thanks for your response. Hopefully as you mentioned someone with experience of APR will see and give advice. 
Thank you for welcoming me to the group- I’ve had great support in the future with the ileostomy group 

Hello Char Cad 

I am really sorry to hear of your recurrence. Your post only appeared on my feed today which, if there is a glitch in the system, could explain why you haven't had more responses.

There are a a few people on here who have had APR surgery and I am hoping that they come on and give you first-hand experience.  As Nicola says it is major surgery and recovery but then people get back on with their lives - we will be hoping that this will be your experience too.

Please let us know how you get on.

Big hug

Irene xx

Hi, I am very sorry to hear of your cancer recurring in the same area.

I have had APR surgery back in 2023 and I am doing well, I can’t say it was the best time of my life but it was manageable. As you already have an ileostomy I think it might be easier post surgery as you can focus on recovery and won’t need to learn about the stoma side of things (not that it’s too hard but I am thinking one less thing to think of).

If you click my profile I tried to document my experience as I went through it so it might be helpful. My biggest tip is to have as much protein as possible as it massively aids healing (hospital food is not good for this, the cartons such as ensure are your friend) and try to stay off your bum wound if possible as mine reopened due to me being on it for 5 days in ICU which really slowed recovery. Honestly you will be ok, it takes time but you can live a totally normal life post surgery. Please get in touch with me if you have questions.

Kirsty x

Oh and also mine was successful with no recurrence so far and I would absolutely do it again if I had to if it means I am well and can be with my family xx

Hello Kirsty and thank you for your response. I have read your profile blog which I found incredibly useful thank you and I’m so pleased everything now seems to be going well for you despite set backs (there’s nothing worse than being cooped up in hospital is there!) 
I like you am a young (ish!) mum with 2 boys so am more worried about the affect my recovery will have on them than myself especially as my eldest is going up to high school in September so there’s so much going on over the next few months to do with  that that I don’t want to miss out on. I‘m hoping as I’ve had the cancerous polyp removed that there isn’t so much of a rush to do the APR. 
I had my 1st bowel op and stoma fitted using robots so only small incisions- I guess from your blog you had a lateral cut ? I’m hoping to have robotic surgery again as healing is quicker Thank you for the tip on eating plenty of protein - I’ll be sure to adhere to that. 
I’ve never had an epidural or nasal tube  (hoping I don’t have to this time either) as sounds horrible. I had a terrible time with morphine last time I was in hospital too. I take it they sent you home with plenty of pain relief? 
Am I right in thinking they provide you with a cushion to take home and advice on positioning to aid recovery? Did nurses come out to dress wound regularly ? 
sorry for the questions but nice to hear off someone who’s been in the same position. 
Many thanks 

Charlotte x

Hi Charlotte, I am so glad it was useful, I found that there wasn’t a lot of info out there when I had my surgery so tried to document as best I could and I am glad it has been of use to you. I am sorry to hear you’re in the same position - cancer is shit at any age but feels especially cruel when young kids are involved. 

It was hard being in hospital twice for a long stint but I think that my blood pressure and a few other issues complicated things more than normal so hope that won’t be the case for you. 

As it’s such major surgery I would anticipate the nasal tube but again it probably won’t be for as long for you and especially as you already have a stoma may not be needed. Also with the epidural it might not be needed if that can do it robotically, that wasn’t an option for me so I think your healing would hopefully be a lot easier and quicker if they can do it that way. Even since 2023 I am sure they have made changes and improvements.

I was sent home with oral oxycodone as I just didn’t get on with morphine and it worked incredibly well, I just stuck to the doses and gradually weaned off within about a month I think. Again I think if you are able to have the robotic surgery you wouldn’t need it for so long. 

They didn’t send me with a cushion - I bought myself a pregnancy pillow which I found was perfect to keep me on my side and help me move myself around when needed. It was a bbhugme and I still have it just in case haha. Nurses did come and dress the wound but if I were you I would push for that daily initially as they didn’t catch my wound breakdown early enough and that was why I ended up with such a terrible infection. Without that I really think I would have been pretty much healed with two or three months as my stomach wound was perfect really quickly. 

Please let me know if you have any other questions x