Total pelvic extenteration tomorrow

Hi Kontikitoo and welcome to the group.

I had a TPE in 2020 and have a permanent colostomy and urostomy, and it’s a major surgery with a long recovery in my experience. 

What I would say about the early days is that you are likely to be very tired and need to take things very easy while you recover. It can take time for the stomas to settle, so you might have issues with leaks from the bags-I’d recommend a waterproof mattress protector on your bed for when you get discharged. 

It is a big adjustment but things get easier as time goes on and you get to grips with managing your stomas. I’d suggest you have help at home when you’re discharged as you won’t be able to do much. If there are any questions you have, ask away and I’ll be happy to try and help.

Sarah xx

Thanks Sarah,

I had wondered about getting one so that is good to know.

My sister is coming to stay the first week I'm home and friends will be keeping an eye on me as I love on my own in a top floor flat.

How did you manage with stairs in the early days?

I walk everywhere and I'm pretty fit so I'm hoping that all helps!

L x

I am in a terraced house, so I do have stairs. I managed ok, but needed to use the bannisters. But I did go up and down the stairs multiple times every day as it all helps with keeping moving after surgery. 

Being fit will definitely help you. I had just been opened up for abdominal surgery 9 weeks before my TPE, so I’d been recovering from that and wasn’t in the best place physically to be having a major surgery. Plus I was having a huge amount of pain as my cancer was spreading quite aggressively.

Sarah xx

Hi Kontikitoo,I wish you well with your surgery.I have a urostomy and the stoma did shrink down in size after my op.You will need to measure the stoma to ensure the bag/pouch fits well enough to prevent leaks.Once the stoma shape settles you can order pre cut bags if you don’t want to cut out the hole size yourself.There will be a template with the stoma stuff or you can use the plastic that you peel off from the back of the bag.Best wishes for a smooth recovery.Jane x

Thanks Jane, there's certainly going to be lots to learn and get used to!

Wow, that sounds like a lot to deal with.

But good to hear you managed the stairs. It's those little things that all make a difference.

I’m sure you will adapt quickly to life with stomas.There are lots of knowledgable people on here who can advise and support you.I had bladder removal and certainly needed my sister around to help out post op.You do feel tired and weak after major surgery but hopefully you will pick up with time.I hope it all goes well.Jane x

It will likely be very hard for you just after the TPE-I didn’t expect the level of exhaustion, and having the total exenteration I was left with a vaginal stump and a rectal stump inside, so sitting was very uncomfortable in the beginning. There’s a lot of healing to be done inside. 

I bought a whole body pillow which was brilliant for support in bed. It’s a very strange feeling to have everything in your pelvis removed-it’s effectively “empty” until everything settles and finds its place again. I did need a LOT of help when I came home-I had so little energy and it was difficult to do things like shower. I had my partner to do that, and also help with my stomas and changing. 

Sarah xx

Yeah I bet it is really strange. My hysterectomy was strange enough and that took long enough to heal fully. I remember coughing and trying to sit up being more painful than I expected.

A whole body pillow sounds like a good idea. 

It's so much to get your head around!

Hey just a quick update as I'm back in hospital with suspected fluid build up in my pelvic cavity. I've been having horrible discharge and just generally feeling more tired than usual. It's a bit gutting as progress was going well despite my would opening up which has also slowed things down a bit. Nothing prepares you for how tiring it is overall and for me a constant underlying pain aaround my coccyx. @sarahH22 your recommendation for a full body pillow has been amazing. Just being able to cuddle up and lie on my side has really helped! Anyway feeling a bit sorry for myself and waiting to find out how they will deal with the fluid build up is my main concern. If anyone has experienced this and info or advice would be much appreciated x