My Mom - post op bladder removal and lymphocele advice

Hi Loobylu82. I don't have the right experience to offer advice, but allow me to welcome you to the group. Sorry to hear Mom is not getting the right support she deserves. I am sure others will be along with advice. I hope all goes well. Best wishes.

Hi Loobylu82,I was very weak and thin after my cystectomy and it took a long time for my bowels to get back to a more normal pattern.It’s still fairly early in your mum’s recovery plus she had a complication so it will take time to heal.Eating little and often is easier at first.I found bread too filling but I could manage sandwich thins with a slice of meat or cheese.I lived off soup,yoghurts,mashed bananas,rice puddings to begin with and then built up to more substantial food.I lost my appetite so eating was difficult but I did manage to put the lost weight back on.I wasn’t able to walk very far at the beginning and it was painful but that improved with time.How is your mum coping with the stoma ? The stoma nurses should be available for contact if she is having any problems.I’m sorry that your mum is not getting much support.I can relate to that as my health centre have been unhelpful  and I still haven’t seen a GP since my surgery 18 mths ago.I didn’t get any support from the specialist nurse either.There is help and advice here though so I hope you find the group useful.Love and best wishes Jane

I think everyone underestimates how weak and tired people are after this surgery. I was 57 & considered myself reasonably fit. When I first came home, I could get myself washed & dressed & would then sit to rest. Other than a short painful, stooped walk, that was all I could manage., then needed an early night & plenty of sleep, including an afternoon nap. I preferred to eat one handed - even coping with knife & fork seemed too much effort. Gradually improved but several weeks before I could tackle any chores. Overall was about 8 months before I was doing all my usual daily activities without end of the day fatigue. Your Mum has obviously had a worse time than me, so it is understandable that she is weak. 

She must rest, but also try to build up walking - two short walks & pottering at home is better than one long trek. As winkers says, eating little & often. Even a couple of spoonfuls of custard or a biscuit every couple of hours will help keep up energy levels. Anything she fancies is OK, but try to concentrate on protein & carbs, small quantities in any easy to eat form. 

Recovery can seem immensely slow, but she should gradually start to be able to do more. Best wishes. 

Thank you for your advice that really helps.

Thank you. Gives me some time scale for certain activites. Very helpful

Hi Loobylu82,I felt better after 4 mths and much,much better by 8 mths.I was able to start caring for my elderly disabled mother after 8 mths but it was very hard and set the recovery back.I think most people who have had a cystectomy would say that it’s a slow recovery process.I had good weeks/days and then other times wouldn’t feel as well.Love Jane xx