Goodbye BCG hello Cystectomy

Trying my best with those pelvic floor exercises 

Best of luck Leo with your planned operation and pleased you have a wonderful surgeon. Shame bcg didn't work but hopefully this will be a better route for you and you will get sorted properly and can get your life back, a different life but hopefully less painful than it has been. 

Hi Leo. I never did any specific exercises but had previous heart surgery and told by my surgeon to walk three miles daily. I’d been doing that for eight years so stayed slim and relatively fit. Physio’s after the op had me up and walking from day 2 and I was discharged on the 7th day. My cystectomy was robot assisted which I was told normally leads to faster recovery due to smaller incisions. Anyway I recovered pretty quickly and was back to my daily 3 miles by week 8. My only problem now is that I’m only very slowly regaining the weight I lost in hospital but that really is a minor problem.

Good luck with it all and you’ll be very well cared for, both before and after if my experience is anything to go by.

Hi Stapled,I’m envious of your quick recovery.It can take a while to put the weight back on.I lost a stone in hospital but as I was underweight to start with came out looking emaciated.I lost more weight at home before regaining it all plus extra during the pandemic.I ate more as I was lonely.My partner had to shield during the pandemic and my late mother was stuck in a care home while I recovered.I missed seeing them so much.It’s good to hear you are recovering well.Best wishes Jane 

Same for me Jane, Didn’t have much appetite and was sick when I tried to eat in first few days after op. That gradually sorted itself out as others have reported but left my BMI in the underweight category. Ten months on I’m JUST back at the bottom end of a healthy weight. My G.P. and Stoma nurse seem to think all is pretty normal after such major surgery and to just keep on doing the daily walks, eat sensibly but take in some extra calories like  healthy fats such as nut butters.

The enhanced recovery nurse said to expect a weight loss of a stone to a stone and a half.I had Ileus so was sick for most of the hospital stay and not allowed to eat.I ended up with a nasal gastric tube but that did help as vomiting after major surgery as you know is a strain.I told the surgeon that I had not vomited for 34 years so it was a bit of a shock.I managed to avoid being sick at home although I felt it.I didn’t feel hungry either and lived off snacks and built up to eating bigger portions slowly.I found I drunk more fluids if I used a straw but even they were hard to manage.You’ll get there with the weight it just takes some people more time than others to regain it.Best wishes Jane