Hi , how are you keeping just now ?

Hi there,

I had a total pelvic exenteration in January, you are not alone!

I'd never even heard of it until I was told I was having it...mine was a recurrent colorrectal tumour which was originally excised last July but had regrown very quickly. I chose not to do too much googling before the op, which involved removing the colon, anus, prostate and bladder, leaving me with a colostomy and urostomy. They then made a flap using my left buttock which is folded in to fill in the space left by the organ removal.  It is a massive operation (11.5 hours for me) but I'm 53, so for a young man like you, it should be a breeze.

 I believe, there are 3 or 4 hospitals nationally which carry out this procedure. 

I'd be very happy to discuss or give you more 1st hand experience...to be honest, the chemo I'm having now as a mopping up process is worse than the op.

All the best, Michael

Hi,

Sorry I got my wires crossed and replied to an older message. Have you had the op now? How was it?

Biggest issue for me since surgery has been sciatic pain in my right leg and foot, which makes it really hard to walk. My surgeon said it might be a year before I feel normal again. Going through chemo is not fun and gets worse each time, but I'm half way there at least. Constipation followed by the runs is not fun with a colostomy.

Let me know how you're doing.

It was difficult yeah for sure. All sorts of weird sensations now.

I had been walking OK today and then somehow managed to putt all my weight and twisted on the leg they removed muscle from and there was a ping haha fingers crossed its not to serious. My wound along where my bottom is has opened an inch. Maybe a scab that fell off so  hoping that's not going to be an issue. I see the nurse tommorrow.

My op was 6 maybe 7 weeks ago and last weekend I took my kids to the caravan park and my youngest has had me lifting her a lot so I think I may have overdone it as I'm knackered now.

I still find it uncomfortable sitting down.

My stoma is a double barreled stoma and it's OK I suppose. It's leaked a few times and that can be a pain getting on top of that. 

My right leg is going to take some healing I reckon .

I had chemorqdiatiin at the start and then the surgery removed all the cancer according to pathology so that's good eh 

It's a bit weird not being able to feel any sensation in your wee man other than a wee twitch now and again lol..

Yes, sitting down is really uncomfortable. I can just about do half an hour at the dinner table, then I'm back lying on my side. Apparently the nerves are still knitting together in the buttocks. I got clearance last week to swim and have a bath, I think swimming will be good therapy once I've sorted logistics. Just got to be patient and let ourselves heal I guess. 
keep in touch, we're pretty rare I reckon.

Hi Tony

Very pleased to hear you have got through your surgery and are home but you have certainly been through the mill! The bed sounds like a wonderful idea-I found it very difficult to get in and out of mine as it is quite low. I’m very surprised you haven’t seen a stoma nurse at home. Stomas change a lot after surgery as things settle down, and it can be trial and error finding an appropriate bag which suits and doesn’t leak. What suits you at the start may need to be changed to a different type and the nurses can help with this and ordering supplies for you. Folds and creases in the skin are a prime cause of leaks, but a different type of bag should help with this. I’ve had more accidents than I care to count over the past year, and even in January of this year which was almost a year from surgery I started having terrible problems with constant leaks from my urostomy, which meant getting no sleep and constant changing of me and the bed! I phoned my nurse, she came round and I got started on a new kind of bag. This was a game changer for me and I haven’t had a leak since. They have so much experience and have such good advice to offer. I hope you manage to see one soon who can help. 

Take it easy and look after yourself-your body has a huge amount of healing to do inside and you need to try not to do too much at once.  I still get very tired if I do that! 

Hi there

I was diagnosed with recurrent rectal cancer in January and my tumor was in my pelvis and was wrapped around my sciatic nerve also. I had a total pelvic exenteration and have two permanent stomas. I had my surgery in Southampton on the 6th May and I am just starting to get back to some sort of normality. I am having physio and able to walk without the crutches at times, but use one crutch when I am tired. I have just started driving again and getting out and about a lot more, it is getting easier and I anticipate a few more months of recovery at least. It was a tough operation to get through and mine was complicated and lasted 20 hours. 9 weeks ago, I woke up and thought life would never be the same again, but I have improved week on week and my options on life were not good without this operation. I see oncology in a couple of weeks time, to see what happens next. 

Hope Bear

Hi,

20 hour op?! I thought 11.5 was bad, I felt like I'd been hit by a bus when I woke up...Seems like you're getting on well with your recovery, I'm midway through a 'mopping up' course of chemo which has set me back in a big way, especially as it affects the nerve endings. So I still need a stick to walk, but im not having any more physio until chemo ends and I've recovered from the side effects. 
All the best 

Yes 20 hours, my poor husband snd daughters, it must have been the longest day for them. I also felt like I had been hit by a bus, but was glad to see the lights on the ceiling when I woke up. I have never been so scared in my life going into an operation. They tried to save my bladder for several hours and then decided it was too near the tumor and they had to get through lots of scar tissue from previous operations as I have had a few! I suspect that I will need chemo and that worries me about the nerve endings as I suffered with that before last time I had chemo. Glad to hear that you are nearly through yours and hopefully the nerves will get better with time for you. I am dreading going through it again, but I have 2 daughters in their 20s and at 48, I want to give it my best shot, Cancer is winning at the moment after returning for the 2nd time, when I thought I had beaten it and had my stoma reversed last year, but I won't give up. All the best to you with your ongoing recovery and so nice to speak to someone who has been through similar, as I found it hard to find anyone who had until I discovered this chat.