Total PE and possible tummy tuck at the same time

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I have been given a provisional date of 21st January 2025 for a total pelvic exenteration and creation of urostomy and colostomy. On 7th January I am also having an examination under GA, for the team to look at how it all looks "in person", as well as looking if I need a tummy tuck at the same time as the PE.

I lost 12 stones about 3 years ago and it's left me with saggy skin on my tummy. Has anyone else had this?

The thought of the initial PE surgery and creation of 2 stomas, is overwhelming. The thought of this extra potential procedure to recover from seems overwhelming. My surgeon explained that it was to give me a better quality of life with my stomas, which I understand. 

I am type 1 diabetic and find healing is slower for me and GA takes me longer to recover from. 

  • Oh, I used to wet myself regularly having radiotherapy so I don’t miss that! I have the card and the loo key here which I’ve needed to use when I’m out. I don’t go anywhere without a clean set of clothes in my bag-I had a small rucksack with me to every radiotherapy appointment too. I love the freedom of having a night bag now and not having to get up!

    Sarah xx


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  • Weight watchers- took 1 year to lose 6 stones at about 2lbs a week and the rest came off the next year although I was not trying to lose then. I just  became more active. I stabilised eventually at goal ie 6 stones. Since cancer  (after the op etc) I lost a stone again and then gained that back and now am about half a stone over the goal weight. It's better now I'm older as a little cushion to protect my bones which were further damaged by the cancer treatment.

    Originally I managed it because I ate for comfort and WW were big on the mental side and although I kept going to meetings as a helper, I stopped when I had a spontaneous hip fracture (no fall involved) in 2017. This is all long after retiring. The stressful work started me gaining weight back in the 80s.

    Funnily, I know what you mean about bending causing leaks - that used to happen to me while doing Pilates on the mats until I learnt to hold the bag on for longer, such a nuisance.

    Both bladder cancer and osteoporosis seem to run in my family: Mum died of the former in 1974, just after being diagnosed with the latter. Getting each of them was a shock, but maybe not a surprise

  • The night bag makes a huge difference.Just before the op I was getting up every 10 to 15 minutes all night so I was so tired.It was one of the reasons I had to put mum into respite care.Now I am awake with back pain but got scans next week so should find out what is wrong with it.x

  • Thats a lot. You must have been dedicated to do it while at work.

    I have leaks from time to time and always carry clothes etc when I'm out. I think I always will. I had a leak and missed the last 15 minutes of Gavin and Stacey on Christmas Day! My own fault I didn't realise how full the bag was. But generally I'm improving.

    I agree with you about fitness. I was in my 50s when I lost the weight but have kept walking, gym - until recently - and just restarted Pilates. However, I was still fit enough for them to operate at 70 despite having to dissolve a clot in my lung.

    I'm trying to rebuild my fitness  but there are things I stopped last year because the doctors told me 'not to  make aggressive movements' in case I cause a bleed in my shoulder. And that put me off for several months. I got very stiff though and now I'm trying to do similar movements but starting gently and using bodyweight rather than resistance machines in the gym. I can see a slight improvement since November so am pleased.

    Latestart x

  • It was a hard slog and took me nearly 3 years due to falling off the wagon multiple times!  I had a busy management job so sometimes it was a thought to go out again in the evening to the gym, but I’m glad I did it. 

    Since my cancer diagnosis I have struggled with things and it’s even harder now being disabled and permanently in pain. I remember your advice about Pilates so that could be a good thing to try. I did investigate it a while ago, but one of the difficulties I have is not being able to get down onto the floor. And then I’d not be able to get up again! I need to do my chair yoga exercises-no excuse not to do them.

    You're a little bit older than me but sound quite remarkable, so I should be using you for my inspiration! 

    Sarah xx


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  • I'm with you on the card, clothes and key. The latter 2 have 'saved my life' several times.

    A couple of months after my operation I had to go to the 02 for an Elton John concert, postponed for several years - my daughter's birthday present from when a stoma was nowhere in our minds. I didn't drink a lot and used a leg bag too which covered 2 hours each way on public transport as well as the concert. The 02 has lots of disabled toilets too.

    My daughter sent a short video to my CNS of me dancing to I'm Still Standing. That went down very well.

    In fact poor Elton looked in a worse way than me as he'd had a hip replacement and could hardly stand up from his piano stool - obviously not doing his physio.

    On leaks etc, I used to use a cera ring as well as a deeply convex bag but stopped the ring a few weeks back as it was clogging up the hole in the bag with more mucus, leaks and even a crystal being formed inside the stoma (which shockingly turned up in the bag the first day after I stopped using  the ring).

    Things are better now though getting the thing properly positioned with my flabby stomach and avoiding inflamed skin is a long job. The stoma nurse said I'd done the right thing when I had my regular review yesterday. So now I'm feeling more confident. I hadn't expected things to change this long after the op but I guess they keep happening. Even the end of the stoma is beginning to protrude a tiny  bit. That was what my old stoma nurse gave me a belt for - to encourage it out. 

    Here's to the New Year and hoping things turn out well for all. Xx

  • I’m not fit enough.When I kept getting Pericarditis I was told to rest and if I do too much now the heart plays up as I have been left with some conduction problems.I’m supposed to walk for the arthritis but it’s so painful if I go too far.Once I have moved I intend to start swimming again as I used to go often when I had neurological problems.It will be good for the joints.X

  • I found love with my can’t wait card.I had only met my partner a couple of times before he came out with us for a neighbours birthday.We went to a local garden and there were steps all around.John due to his muscular condition said he would have to stay at the top part of the garden as the stairs were too steep for him.I stayed to keep him company.I needed the loo and asked whether he had noticed any.I said I had a can’t wait card but had never used it.He said snap and produced one from his wallet.After that we chatted about our health and a few months later started going out.X

  • Blimey, if I can inspire you then I take it as a big compliment. Have you looked at the NHS website? I keep meaning to do the Chair Pilates routine. I do get onto the floor now but am creaking going up and down though slightly less each time.

    Before I get up in the morning I also do what an old teacher of mine called Duvet pilates - a few arm movements and gentle leg rolls - my husband started doing them and they get us both gently energised. I can't do much with legs and core though as they can give me cramp in my thighs because there's not quite enough support for lower back.

    Onwards and upwards! xx

  • What a romantic story. I've never used my card but after that shan't hesitate if I need to x