Just diagnosed

Hi DerryRose and a warm welcome to the group, although sorry you had to find us. You say you are young for this , but unfortunately we are seeing more younger people all the time. I can't help with your cystectomy, but we have many members here at different stages, and I am sure you will get lots of support and help going forward. Best wishes.

Hi Derry Rose, I have G3 pT1 , I have had a TURBT followed by  re-resection that showed that I was clear of cancer cells. I was then offered a radical cystectomy or BCG treatment, I opted for BCG as am "only" 61 and did not want to spend the rest of my life with a bag. If this is an option offered to you I would seriously consider this first, the side affects for some can be bad but I have had 5 of 6 treatments so far with no serious side effects aside of fatigue, unless your transplant precludes this treatment. Chris

When choosing between BCG & surgery, it is important to understand not only the pros & cons, but risks & benefits, in relation to your personal circumstances. I was 56 at time of diagnosis & chose surgery for best prospects of cure ( among other reasons). I was able to have neobladder, which has its own issues, but 11 years on, I have no regrets. 

DerryRose, your young age will stand you in good stead, but be prepared to be extremely  weak & tired at first. Recovery in total takes around 8 months but it is a gradual process so you will start picking up normal activities in a few weeks. You may not have much appetite & bowels can be erratic. The best way to help recover is building up walking, even if a slow shuffle at first. Eat a little every couple of hours or so, concentrating on protein and carbs. Plenty of fluids & lots of rest. Hope all goes well for you. 

Hi DerryRose,Welcome to this friendly group.I had a cystectomy nearly 3 years ago.I had Squamous cell cancer which was advanced T3b G3.I haven’t had any problems adjusting to life with a stoma.The stoma nurses will show you what to do at the beginning.I was able to change the bag unaided during the time I was in hospital.It is a big operation and recovery takes time.It’s important to walk/shuffle a little each day as this will help to activate the bowels.You will feel weak and fatigued to begin with but this will improve over time.My sister looked after me for the first few days after I came home.Once she returned to work she left out non perishable food where I could reach it easily without having to bend.I was on a low fibre diet at the start as this allows the bowels to recover.Eating little but often is best following a cystectomy.I lived off snacks at the start,sandwich thins with meat or cheese,soup,cheese and biscuits.jellies,yoghurts and rice puddings.These were all easier to manage with little appetite.Recovery can be a bit up and down,some days are better than others.It can be frustrating but finding an interest can help.I took up art and genealogy,read and watched tv.After 8 months I felt very much better.I hope it all goes smoothly.There is plenty of advice and support here.Best wishes Jane 

Hi. Im also under 40 (35 years young) and they found a patch on my bladder. They have removed the patch and I am waiting for my diagnoses (I'm in the UK). I keep getting reassured by the professionals that although it looks like cancer they will be shocked if it is due to my age although I'm hearing more and more younger people being diagnosed with this. 

So sorry for your diagnosis. 

Hi Chris, 

Thank you for sharing your experience,  its important for me to getting as many perspectives as possible with this. I have been advised that it is my decision to go with BCG or Radical Cystectomy however the latter has been recommended due to my immunosuppression.  Its a huge decision to make so that's why I am interested in hearing from others who have been through either or. 

Thank you so much for this Jane,  this is exactly what I was looking for. I have experienced a transplant before so I know recovery will be intense for the first year but I am more concerned on the practicalities of living with a bag.  This has eased concern for me so thank you again for sharing your experience!

Hi Rachel, 

I hope you are doing OK with the waiting for results. For me that was the worst part so far, the not knowing. I do hope that its good news for you and that you are waiting too much longer for the outcome x

Hi DerryRose

I live with 2 bags since I have a colostomy in addition to my urostomy, and I had my surgery 2.5 years ago. I’m very used to dealing with my bags, and don’t let them limit what I do as far as travel abroad etc goes. 

My recovery was very long, but that is because of the massive nature of the surgery I had, so I did need a lot of support in the short term when I came out of hospital as I was exhausted and very weak. 

It can take time to find the right bag, but once you do it is no problem. Stomas take a little time to settle down after surgery, so there can be a bit of trial and error involved at first as you get used to it and find a bag which suits you. There is a huge range of products out there and it’s definitely not one size fits all!  I had a brilliant stoma nurse who visited me regularly at home for the first few weeks after discharge who was full of useful advice and tips.

Accept that you may have leaks, and invest in a waterproof mattress cover, or ask your stoma nurse for one just in case of a leak in the night. I still occasionally have leaks, which can be frustrating but practice makes perfect as far as changing the bag goes!

You will need to take it very easy after surgery and recovery can feel slow, but your body has a lot of healing to do, so accept you will need to rest up. 

I don’t wear different clothes to what I wore before, and have simply adapted to my new way of life. I think the thought of living with a bag or bags is much worse than the actual reality, and I’m quite happy not to have to get up multiple times in the night to go to the loo!

Please feel free to ask about anything specific you’d like to know.

Sarah xx

Hi DerryRose,Hopefully you will find that the stoma becomes part of daily life and you will get into some kind of routine.I found changing the bag trickier in hospital than at home because I had drip stands and tubes in the way.I didn’t feel that confident to begin with but felt a sense of achievement when I managed to change the bag unaided.For me having the stoma has improved my quality of life.From my early 20’s I had Interstitial cystitis and by the time the bladder was removed it was severely diseased from ulcers,red patches,scales and cancer.I don’t miss my bladder at all it caused years of pain.The cystectomy was life saving as my prognosis was grim.I’m able to do everything I did before and emptying the bag is no problem when I’m out.I didn’t try different kinds of bag as the first one seemed to suit me and I have had very few leaks and all were in the early days.I still wear much the same a before but have added some tunic tops which I find comfy as my stomach has always been a bit distended since the surgery.I’m happy to answer any questions.I had so much help from this group when first diagnosed and frightened.Not having to get up in the night is a real bonus as you plug your bag into a much larger night bag.Jane x