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Has anyone had a cystectomy? What can I expect after surgery?

After the procedure, what are some things to be aware of or questions to ask the doctor?

  1. A cystectomy is a type of surgery that patients with bladder cancer may need to have in which all or part of the bladder is removed.

    One of our writers, Paul, wrote this piece titled "4 Things to Consider Before Your Cystectomy" where he discusses his answer to this question.

    I'll be posting any additional resources or articles about cystectomies here as they come. If there are any other questions related to this procedure, this is a great place to ask!

    -Sarah (BladderCancer.net Team Member)

      1. Hi everyone, I had my bladder and prostate removed due to cancer, just 5 days ago! Wow, I am shell shocked and overwhelmed, in spite of wonderful surgeons, doctors and nurses at Guys Cancer Wing, London. I’ve had my first lesson attaching my stoma bag and then the night bag but I’ve been loaded with stuff in a bag and told that I need to take it everywhere with me and spare clothes in case of a leak. I find this very depressing, so please someone, tell me it’s not so bad. Do we always get leaks and need to take all this gear with us wherever we go? I badly need cheering up as I’m on a bit of a downer right now.....your help would be greatly appreciated.

        1. Hi Andy,

          The first few months I did take a bag, stoma stuff and a change of clothes with me, as it was all new and I wasn’t really that confident.
          As time goes on, you do get used to everything, I promise you... I don’t take any bag or stuff with me now if I fairly close to home however if we go on a long drive I attach my night bag whilst I’m driving and put it behind my seat.
          It feels like we have so many leaks in the beginning sometimes it is trial and error until you find the right bag. I use an oval ring over my stoma and then fit my bag as I was having leaks daily, touch wood this has helped and I rarely leak now.
          Hang on in there, it is very early days for you still, your body is still healing and it’s a lot to get your head around in the beginning... am at the dentist will write more in a minute

        2. Hi Again Andy,

          I survived the dentist please don’t be hard on yourself, it really does take a bit to get used to your “new normal”. I think for the first few months I would get my husband to stand over me whilst I changed my bag. It really does get easier.
          Once I got home I found a v-shaped pillow helped me to sleep as I sleep on my side and could lie down flat, so the pillow was perfect. I did make sure I walked about abit every day and I continued taking pain relief until for a good few months. There is no right or wrong way to recoup after having your bladder out.
          I had peppermint tea and sucked boiled sweets to help with the wind. I also had small meals, like a little tub of pre made jelly or rice pudding, little and often.
          It WILL get better, just keep thinking “this too shall pass”. Day by day, week by week you will start to feel better.
          Remember to really speak with your stoma nurses, they are a godsend. They will help sort out leaks and advise on different products that may help you. Please stay in touch and take care

      2. Hi there Andy, as Anita says it’s very early days yet. It all seems quite overwhelming in the beginning but I promise it does get easier. The first few weeks are when we are likely to get “leaks”. This is mainly due to the swelling on your abdomen going down and your little stoma taking on it’s natural shape. Also the “bags” that we start of using in hospital ultimately may not be the ones we continue using later. If your stoma goes inwards a convex bag is best, if it sticks out then use a converse. I sent off to various “stoma suppliers” for samples of basically everything. Bags, adhesive remover, barrier sprays and creams. Also, to help stop leaks I used what they call an “elastic tape”. Basically it’s about a one inch wide, half moon shaped adhesive strip that you stick around the edges of your base plate. I found these work really well and did give me added confidence and security. Like Anita for the first few weeks I took a spare change of clothes out with me, “just in case”. I can tell you however, that thankfully I never needed them. Unlike Anita I always have a small toiletry bag with me containing, spare bag, adhesive remover wipe, barrier wipe, dry wipes and a refuse bag to dispose of everything discreetly.
        I know it seems a lot to take in but just 5 weeks after surgery I took my first flight. At 5 months me and hubby went backpacking around SE Asia for 6 months. In that time I travelled on overnight buses, trains, went swimming, walking, had a massage. Basically having a stoma doesn’t stop us from doing anything we did previously, with the exception of lifting or carrying anything heavy. If you are into sports, get yourself a support belt, sometimes called a hernia belt. These give added support around the abdomen and stoma area.
        Once you are in a routine it will become so much easier and just a new norm, like shaving or showering. To cheer you up I’ve just completed a two week rally. Driving over 3000km in a rickshaw for a bladder cancer charity. We had no support, no back up, just me and hubby driving from the top to the bottom of India. My stoma never played up once and we had an amazing time.
        So although it’s tough right now, within a few weeks everything should settle down and you can get on with your life, playing golf and all the other things that you enjoy doing. In the meantime if you need any help, we are always here to support you.

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