Op day looming

Hi Jenny, I had a radical cysectony (I'm male, so they also removed my prostate). Is there anything specific you need to know? Also, if you have a Maggies Centre at your local hospital, they are well worth a visit. The staff there are so kind & helpful.

The main thing post op is to try to get on your feet for short walks around the ward & also to get your pooping working again.

It is hard, especially if you are used to being in control. At first, you will probably welcome lots of help & appreciate plenty of rest. The frustrating time comes when you start feeling a little stronger but still can’t do much. Patience is the key! I kept a sort of journal of each new achievement, which helped as I could look back and see how far I’d already come. Try to have some small goals which will gradually build up to more significant activities. When you can eat again, have a little something every couple of hours or so and gradually increase walking. Avoid pushing yourself too much or you will pay for it the next day. Hope all goes well.

Thanks for the reply Coojee. There isn't a Maggies Centre in Leicester. I am so worried about the after effects. Not pain ( i have had a Hysterectomy and knee replacement) It's the not being in control and I don't deal with illness very well

Thanks Teaswill. 

Hi Jenny

I had my cystectomy just over 7 weeks ago and can relate to what both Coojee and Teasswill have said. I have found the two trickiest bits to be fatigue and bowels. The first few weeks I felt very tired and the advice of listening to your body and making sure you rest when you need to is good. Also the getting up and walking around the ward which helps get the system working again. 

I'm now feeling much less tired and things are improving a lot. Still have a few issues (recently started one thread) but it does get easier and  my spirits are raised when I hear some of the experienced on here talk about how they can do all (or virtually all) that they could do before.

Mike

For the first month or so, you will feel fatigue & suffer the after effects of the anesthetic. I was having showers holding onto my wife. You will be able to make it up & down the stairs & there will be some trouble getting your poop regular. Pain will be not too bad. You can wean yourself off the pain pills in hospital. Once home, I was often feeling faint & held onto things in case I fell over. There is a routine to get into with your stoma bag & how to fit is correctly with no risk of leaks. . I had been in hospiital for 2 weeks post op due to an infection. I wasn't particulary hazy brained, as I had to withstand my wife shouting at me daily as she was very unstable & suicidal at that time. I was able to talk her down several times. It would be useful if you can get help for a couple weeks. If you don't want that, it's possible to do it on your own, maybe with pre-made small meals. Try to eat healthy & build up the fibre slowly. Perhaps get some Laxido in from the GP to be ready in case you need it.

Hi Jenny,It’s nearly 3 years since I had a cystectomy.Post op I was fairly with it but tired.I wasn’t in a huge amount of pain and apart from in Intensive care I managed just with paracetamol.Take in loose fitting clothes as your stomach will probably be distended to start with.I was able to manage my stoma unaided after the first few days.I tried to get washed and dressed every day and walk up and down the ward holding onto the bars.Once I was home my sister came to stay for the first few days as I was weak and wobbly to begin with.When she had to go back to work she left non perishable food out where I could reach it easily.I was able to open the fridge very carefully.I did have bad constipation because my bowels stopped working in hospital.Once that was sorted I felt better.I was on a low fibre diet to begin with and didn’t have much appetite.Eating little but often is the best.I found bread too filling but could manage sandwich thins and had those with cheese or meat.I lived off soup,cheese and biscuits.rice pudding,jelly and yoghurts early on in the recovery.I built up to meals but only small portions.It’s important to try and walk/shuffle each day and listen to your body.It will give you signals if you have done too much.Recovery takes time but if you find something absorbing to do that will help.I took up genealogy and art as well as reading and watching a lot of daytime tv.My goal was to get back to gardening which I was able to do after a few months.Best wishes.I hope your op goes smoothly.Jane x

Thank you so much for all your kind replies. They are really helping me. I think the worst part for me is thinking of the fuzzy head I had after my hysterectomy. I was out of sorts and ended up with deep depression and anxiety after that op. I don't want that to happen again. I always have bowel problems after operations, usually don't go properly until I get home. I am lucky, sort of, because my son lives with me at the moment and my daughters are very near. I say sort of because my son is a recovering alcoholic and I am on edge most of the time because of it. But, I do believe, he will look after me well. After my replacement knee op I refused strong medication after the first day and just managed on ibuprofen and paracetamol which didn't work well but kept my head clear. 

Once again, thank you so much for all the comments

Jenny

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Hi Jenny. The first thing I advise is be kind to yourself. I was off with the fairies for a few days after my op. Yes it was difficult for a few days but I soon rallied and just took paracetamol. It's been 4mnths since my op and I'm back to what I consider to be my new normal! Soon got used to changing my stoma bag after a few tearful  days but my stoma nurse was wonderful and it's second nature to me now. Stay positive and all will be well. Sending hugs x

Way to go Maora!!! So happy for you