New to the group- partner just had Cystectoproctectomy.

Hello Miss T08 and a warm welcome to the group. Not had this myself but we have many members here who have this. Being on here for some time  I know it takes a while to recover and adjust but most people seem to get back to normal and lead good lives. Best wishes.

Hi MissT08,Welcome to the group.Hopefully the men will be along to share their experiences.I had my bladder removed 4 years ago.It does take time to recover so it’s important for your partner to listen to his body.I spent the first month doing very little but resting.It’s best to eat little but often.It’s common to lose your appetite but you do need to eat and drink even if it’s in small amounts.Build up walking levels gradually and a good tip I got here was to use smaller steps.I did feel very emotional post op and one of the dr’s in hospital said this is not uncommon after surgery.I tried to go with the emotions rather than suppress them.Some days it all felt overwhelming but then you have to tell yourself it will get better.I used the recovery period to take up gentle hobbies like art and genealogy.It did help to pass the time.Just sitting outside for a while each day helped mentally.I felt better after 3 months but it was 8 months before I was able to go back to caring full time for my late mother.It’s good that your partner has your support.Some weeks/days will be better than others but hopefully your partner will improve gradually.Let us know how he gets on.There is advice and support here if you need it.Best wishes Jane 

Hi Jane, 

thank you so much for your reply. It has been a real challenge so far and I know that there are many more to follow. 
it’s really hard watching the person you love go through this - it’s kind of hard putting it into words. It’s also really tough coming to terms with the changes it makes to the relationship. 
You sound like you’ve really been through some tough times. I hope you’ve had some support too! I am super inspired that not only did you pick up new skills but that you then returned to being a full time carer for your dear mother. You are amazing. 
The advice you have given about eating and exercise is fabulous, thank you - it’s hard to imagine what he has been through and how that still continues to affect his appetite, I think it’s easy sometimes to assume that a few weeks on things would be starting to normalise a little. I think the exercise tip is really helpful too, I will make sure I share this with him.

Thank you so much for sharing part of your story with me. You sound like a strong and lovely lady - I wish you all the very best and hope to speak again soon. Tina x

Thanks Rily, sending my very best wishes to you too x

Hi Miss T08 

This really is a big surgery to go through-my father in law had exactly the same operation done on 1st September this year. I’ve also had my bladder removed but obviously all a bit different as I’m a woman!

For my fil, I don’t think he fully appreciated (despite my warning him!) that he would be very tired and need to listen to his body and rest. I think he thought he would be up and about in a couple of weeks and it’s just not been like that. He is still quite weak, has lost a lot of weight and does need to rest more than he used to. He really lost his appetite but this has come back now that he has a meals on wheels service organised which saves him cooking for himself and my mother in law (she has dementia so isn’t able to cook). 

For me after my surgery, which was more extensive than only bladder removal, I found recovery wasn’t linear-in other words I didn’t automatically have one good day after another and sometimes it can seem like you’re going a bit backwards. Eventually you get there but it does take time. 

I think what really helped me was having a lot of help from my partner who wasn’t phased at all by me having urostomy, and I do also have a colostomy. I really appreciated in the early days of recovery having help with bag changing and personal care when I was very weak. 

You haven’t mentioned just how long ago your partner had his op. Is there any practical advice that you would like about having a stoma, ordering supplies, or tips we can share that we learned along the way? I had my surgery in March 2020 and learned a lot by trial and error as I went along as I wasn’t a member of any forums like this. We also have a stoma support group within the community where you can join if you wish, or just have a read through the threads to see if you find anything useful. I can’t seem to add a link at the moment but it’s called “Ileostomy, Colostomy and Stoma Support”

It is really a massive life change but I would say offers a good quality of life afterwards and is worth it! 

Sarah xx

Hi Tina,How long ago was the surgery ? Most seem to find the first few weeks the worst for exhaustion and weakness.It’s not easy trying to eat and drink with no appetite but snacking will help to build up the appetite.At first you are usually on a low fibre diet to allow the bowel to recover.You can start introducing higher fibre food over time and see how things go.I found bread was too filling but could manage a sandwich thin with may be a bit of cheese or meat.I tried to keep a drink handy and a straw as I found regular sipping was easier than trying to drink large amounts in one go.Has your partner got a stoma ? It is life changing but you can get back to life once you have recovered.Recovery rates do vary but it is usually a few months before you get back to full strength.Keep in touch and I’m happy to chat off the board if it would be helpful.Jane x

Hi Sarah,That is so true about the recovery not being linear.It can certainly be a like a roller coaster.x

Hi Jane

I had been warned of this when I met other ladies one day for lunch who had been through the surgery. They were absolutely right! Very up and down in those early days.

Sarah xx

Hi,

I had a cystoprostatectomy in 2014 --( G3 grade) I have been lucky to be still leading a fairly normal life - for a 77 year old ! -  subject of course to limitations caused by wearing a urostomy pouch |.

I firmly believe that a positive can do attitude is the key -- "life isn't about waiting for the storm to pass, it's about learning to dance in the rain"! -- I know it's easy to say, but at least fro me -it works and has been my mantra for the past ten years !

Informed advice is always available from the suppliers of my pouches  -- Salts Medilink - who I wholeheartedly recommend.

Best wishes