After 1st being diagnosed with rectal cancer last September (24) and a regime of radiotherapy +chemo and then CAPOX Chemo going from January til June my OH was signed off with the oncologist and passed back to the surgical team.
We have now had a meeting with Surgeon yesterday
After being told OH had a very good response to radiotherapy & chemo the Tumour in the bowel has been reduced to just fibrous tissue but there is still some in one of his lymph nodes.
if it hadn’t still been in lymph he would have been offered watch & wait HOWEVER because there is still a bit in the lymph they are recommending APR surgery.
We always knew this will be an option but now it’s a reality it’s hit us both today like a ton of bricks.
Fortunately the surgeon has agreed to delay until after a family wedding in September (mid august was mentioned) so we have time to adjust and get our heads around it.
Can all you lovely peeps out there tell us your hints & tips for dealing with APR and getting used to a stoma.
Thank you
Bx
Hi Bella12
I am sorry that you have not yet had a response to your question but sometimes it can take a little while.
Hopefully by me replying it will bring it to the attention of someone who has had a APR and has had experience of a stoma.
I am pleased that your OH has shown a good response to the chemo and radiotherapy and can understand that it must have been hard to be told that there would be a need for further treatment.
I hope that the wedding goes well next month and during the time you both are able to adjust and prepare for the surgery.
This link has some general information that may help until you get a reply.
Hopefully you soon get a reply from someone who can offer some more specific advice but in the meantime we are here if you need us.
The Support Line is also there if you feel like you would like to talk things through with someone. They are there from 8am-8pm daily.
Jane
Hi Bella12
I’m sorry you didn’t get a reply sooner to your questions but hopefully others will now come along and be able to help. My experience was a bit different in that I didn’t have an APR, but I did have a total pelvic exenteration which involved amongst other things, losing my rectum and bladder and having two stomas formed, so there are some similarities in the magnitude of the surgery and the outcomes.
The news will be a lot to get your heads around and process, now it’s been confirmed, so you do need to both give yourselves time to absorb it, and be able to accept what’s next. I think it’s very good news you’re going to be able to attend a family wedding first and wait a little bit longer for surgery to happen.
I have a permanent colostomy now, as well as a urostomy with the loss of my bladder so became a double bagger immediately after my surgery. I had time in advance to get used to the idea of 2 stomas as I always knew it was going to happen, but it is an adjustment to make, both mentally and physically to have any stoma, and also an adjustment for the partner/carer.
When I woke from my surgery I was very sleepy and had a pump in my hand to deliver pain relief. I was in the high dependency unit for 2 nights and monitored carefully. I was allowed to have my partner visit but wasn’t really compos mentis during that time!
I had a number of drains and was on oxygen. I was visited by the stoma nurse when I got back to the ward and my stoma took a week to. “get going”. There was no concern about the time this took, as I did have wind coming through the stoma which showed it was working. The stoma nurses dealt with changing the bags initially, but they should show your husband how to do this and normally make sure he can do this himself successfully before discharge.
The stoma nurses will provide all the supplies needed, and give you some to take home, and will let you know the system for ordering future supplies. The stoma will change shape as healing takes place and things settle down and so it will be important to measure the stoma regularly (the stoma nurse will give you a template and show you how to do this).
I found it really helpful that my OH was not at all phased by my stomas. It can be a shock to see one, no matter how many pictures you look at online, but it helps not to show surprise and just accept that this is a necessary part of life going forward. It’s also helpful if you can be involved initially in changing the bag and getting used to it. There might be times when your husband is too tired or weak to manage himself and will appreciate another pair of hands!
I’d recommend getting a waterproof mattress cover in advance and some incontinence pads to lie on. Bags in the early days can burst or leak, which can be quite upsetting, but ensuring that the hole in the bag is cut to the correct size can really help in avoiding this.
Initially the output (poo) for me was very liquid so I used a drainable colostomy bag, but things can change as time goes on and it’s very possible to try multiple different products to see what’s best for the individual. The stoma nurse can advise, and you can request free samples to try. Typically the output with a colostomy has a more solid consistency in time and changing the bag and cleaning becomes second nature with practice.
This major surgery will be very tiring and there is a lot of healing to do both internally and externally, so resting is a big part of recovery. Try not to expect too much too soon, and it’s important for your OH to listen to his body and not to try to do too much. Having any kind of stoma can cause a hernia (parastomal hernia) so it’s important not to lift any heavy items for example.
I hope this has helped a bit, but please feel free to ask any questions as you think of them and hopefully others who’ve had the APR will reply too.
Sarah xx
