Abdomino perineal resection

Hi Flobee. I had a different type of surgery but if you type APR in the search box at the top of the screen then you can a read through previous posts x

Hi Flobee

i had this procedure in April 2022. It was very painful but ok with lots of painkillers. I had a lie back chair in which I could lie on one side. I spent a lot of time in it! The district nurse brought a cushion which helped later on.
By autumn I was pretty mobile but then got a bladder prolapse ( there are  uro genital displacement problems that can occur due to having a rectal void). I am 69 and had 2 children so pelvic floor pretty dodgy anyway. 
No support really for us, lots of great stoma nurses but no one to give apr advice.

A year on I have a struggle at times getting in and out of the car. Also strange confused rectal nerves that tell me that I have a ‘potato’ in my bottom. Lots of phantom colon feelings in first few months. It aches when I stand up after sitting, for a minute or so, but if I squeeze my bum muscles a few times before getting up it’s ok (just worked that out!)

The healing up took a while but luckily I had no infections. I moisturise the scar tissue twice a day with Dermol.

Pleae feel free to ask me anything else. I have the tee shirt!

Rosie 

Thank you for your help. I've had the surgery and finally made it home after 3 weeks due to issues with my stoma not working and a chest infection on Friday. 

I'm getting a lot of leakage from the wound on my bottom which is causing problems with dressings staying in place and keeping the area dry.

Spending a lot of time in bed on my side and I'm trying to lean on feather pillows on the sofa but the pain is still pretty bad even with a cocktail of pain killers.

It was good to hear from someone who had gone through the same surgery and to be aware of things that could happen in the future. I just need to keep reminding myself that it's still early days and it will get better even if it's hard at times though. 

Thanks again for your reply 

Hi Flobee

i had loads of leakage too.The nurse came every morning but by evening the dressing was sopping wet. My fella changed it and the nurse left extra dressings for him. It will dwindle and stop..I think it took a couple of months and then I felt so much better. My stoma is called Moaning Myrtle and she is retracted and stenosed so difficult to deal with! I am easy with her now after a year. I am on a waiting list for her to be fixed as I get lots of blockages - beware olives and chew all food to death!

Be strong! Better than dying definitely and all will be well. 

Rosie x

That's good to know about the leakage situation. Will probably have to do the same as I'm having the same problem with the dressing being so wet by the end of the day that other half will have to have a go.

I've named my stoma Howard and he's named after the disco duck from the 1970s because he made quacking noises when I first had him last July. I go between constipation and too loose but like you said having Howard and the APR surgery is definitely better than dying. I'll get there. 

Hi Flobee 

I bet you were so relieved to finally get home. I had the same operation on 23 February and was in hospital for 10 days. The day before I came home, I was so fed up that I jokingly refused to fill out my menu choices for the next day saying I would go on hunger strike if they didn't discharge me!

I like you, was given a temporary stoma in August. Her name is Sybil and so far she has been well behaved. However, when it was confirmed in January that she would be a permanent fixture in my life, I struggled to come to terms with it...I think it was a little bit like a grieving process which I think I have pretty much got my head round now. In the space of a few short months we have so many different things thrown at us that it is little wonder things take a while to get our heads around.

I like you have spent alot of time lying down and I am still struggling with sitting. I am starting to move around alot more though and have started doing a few bits and pieces around the house. I have started walking around the block and even wandered around a garden centre for an hour on Saturday. So things are slowly improving.

Everyone has said to me to be kind to myself and I think that's it....you have dealt with so much over the last few months and now it's time to recover at your pace and in your time.

We will get there!

Thank you for sharing your experiences of having the APR surgery. I'm definitely relieved to be home and sleeping in my own bed without constant interruptions and eating food that is edible at a time that I want to.

Good to know you've come to terms with Sybil and she's behaving herself. I think I knew all along that Howard would be permanent but it was my husband who kept saying that I would  not need the surgery and  it would be reversed and so has struggled with the process.

The worst part for me is still the leaking from the wound and having a very wet bottom all the time. I know it'll take time and I'll get back to my new normal eventually. I'm just having to work on being patient and being kind to myself.

Thanks again for sharing I really appreciate it 

I have some understanding about the leaking....

Although mine isn't coming from the wound, I am still getting alot of discharge vaginally. I have been tested for an infection but that is clear so the general understanding is that it is quite a common side effect and that it is just my body healing. It was suggested to me about wearing period pants which at the grand old age of 58, I had never heard of! I have since bought a couple of pairs and am finding them more comfortable than pads etc around my wound.

Fingers crossed things will start to get a bit easier for you soon.

Hi Flobee

I hope you and Howard are ok? It is all very stressful and tiring and painful. It will all improve slowly.

it took about 8 months for me and Myrtle to become fully accepting of each other and for Myrtle to be part of me  

I have just been away for 3 days with old school friends and felt quite relaxed and open about it all. It was the first time I’d been away without my husband so it was a milestone for me.

AND I’ve been to the swimming pool. I was worried about it but it was fab and the lack of gravity in the water was lovely. 

Thought I’d mention that when my wet dressings eased off and I only had a bit of leakage I put a nighttime Always ultra pad in a BIG pair of high waisted knickers, sort of further back and up than with a period, and it was amazingly comfy!

Take care and don’t be in a hurry.

Rosie

Hi.

Howard and myself are getting on a bit better at the moment. He's working most of the time now and so not having arguments with him at odd times of the day or night.

I'm still struggling with a lot of leakage and dressings coming off after only a few hours. Last night I had a lot of blood from the wound but the nurse who came this morning couldn't find a reason. Luckily I see my surgeon tomorrow so hopefully will get some answers. Hoping he'll tell me that I'm cancer free and won't need any more treatment .

Good to know you've been swimming as I used to love to swim but have been very anxious about going since having Howard. 

One of my aims is to go away with a friend in her motor home to the seaside in June for a night to meet up with other friends which will be my first time away from home . Everything seems scary at the moment. 

I've been using huge incontinence slip pads at the moment but thanks for the tip of the other pads I can use later down the line.

Really appreciate that you've taken time to respond to my post. It really helps to hear from people who have had the same things as me.  Just need to get through this painful and soggy time to get my life back to the new normal xxx