Living with a Neobladder: Tips and Advice

There are around 10,300 new bladder cancer cases in the UK every year, which is a shocking 28 every day.

Bladder removal surgery (cystectomy), is often performed to treat invasive or recurrent bladder cancer. After a cystectomy, it is often possible to reconstruct a new urinary bladder to allow urine leave your body. A neobladder is a type of bladder reconstruction performed during a radical cystectomy. Neobladders are the main alternative to having a stoma with a bag attached to your abdomen. This operation can really improve your quality of life. A neobladder allows you to pass urine the same way as you would a normal bladder, which is why so many people opt for this method. It also means you do not need to use an external device to collect your urine after your cystectomy. The neobladder itself is urinary pouch typically made from 50-60cm of the intestine.

Interesting Fact: The first neobladder was performed in 1959

Have You Had a Neobladder Fitted? Post a Question on our Forum for Expert Advice

What Occurs During a Neobladder Operation?

A neobladder is a new storage area for your urine once the bladder is removed. During this operation, a piece of your bowel is cut out, and the remaining bowel is sewn back together. A neobladder means your new bladder is made entirely of intestine.

 

Are there any Complications of having a Neobladder?

Like most methods of surgery, there are complications that can arise from having a neobladder. The most complications of a neobladder include the following:

  • Temporary urinary incontinence. The likelihood of this complication depends on the reason you are having the neobladder. In many cases, the surgeon will leave behind the section of the urethra with the sphincter muscles. These are the muscles that keep you continent. For bladder cancer, however, the surgeon may have to remove more tissue in the sphincter muscles area. This makes it more likely for you to experience temporary incontinence. Most people regain day time incontinence within four to six months. Many people are incontinent at night for up to a year after surgery. A small percentage of people, however, are incontinent for much longer than this.
  • Mucus build up, which can cause stones to form. As the cells lining the intestines create mucus, you will experience mucus draining out with your urine. Your catheter and neobladder will therefore require regular irrigation to flush mucus out.
  • Inability to empty the bladder fully. Urinary retention is common, as neobladders can take some time in getting used to. Individuals often find it difficult to empty urine for a few months after the surgery.
  • Urine infections. Urine infections can occur if your catheter irritates the bladder or it is not cleaned frequently.

Living with a Neobladder: Our Guidance

Your Doctor should advise you on taking rest from work and allowing yourself to recover. After having a Neobladder, an average of three months off work is required. Patience is key to adjusting to your new neobladder. Try not to be too hard on yourself and take the time you need to adjust to it.                                              

You may have temporary urinary incontinence after a Neobladder. At around 3 weeks after surgery, you will undergo an x ray of the bladder to ensure the bladder is well healed. This is called a “cystogram”. If this shows no leak, the catheter in the urethra will be recovered.

Emptying your New Bladder

For 2 to 4 weeks after your operation, a catheter is put through the urethra into the new bladder and is left until the joints have healed. Urine will be emptied into a collection bag.

You will be taught how to empty your new bladder after you have the catheter removed. You need to train your muscles to put pressure on the neobladder to force urine out. This can be done through contracting your abdominal muscles or pushing down on the neobladder. You also need to learn how to relax the pelvic floor muscles. Practising pelvic floor exercises can help. You should be shown how to do these to strengthen your muscles. You can read about practising pelvic floor exercises here.

You should expect life to be slightly different with a neobladder than your old bladder. A regular bladder has nerves that alert you when you need to urinate. The sensation with your neobladder may not be quite the same. Many patients reporting a feeling of “fullness” that is different from the feeling they previously experienced.

Did you Know?

Constipation makes it harder to empty your neobladder. Preventing constipation by eating plenty of fibre and consuming fluids is vital.

Stay Active 

It is important to stay as active as you can before and after surgery. However, you should ensure you do not do anything too strenuous or any contact sport. If you already have an exercise routine in place, talk to your Doctor about whether it is safe to maintain this. Most professionals recommend gentle, frequent walking and exercise.

Maintain a Healthy Diet

Maintaining a healthy diet will allow you to recover quickly from surgery. Follow these tips for a healthy, balanced diet:

  • Eat plenty of rice, bread and potatoes, starchy foods and pasta
  • Eat a lot of fruits and vegetables
  • Drink and eat some milk and dairy foods
  • Eat sources of protein. This includes lean meats such as chicken, fish and turkey. Eggs, nuts and beans and also vital
  • Try and avoid foods high in fat and sugar
  • Drink a lot water.

If you are Diabetic, it is vital to talk to your Doctor about improving blood sugar control.

 

When to Call for Help

Taking care of yourself with a neobladder is vital. If you experience any of the following problems, ensure you call health services:

  • You drain more than 150 cc’s of urine through the catheter
  • You have severe constipation
  • You notice severe, sudden pain

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Originally posted 2019-04-16 13:34:12.

3 Comments

  1. Bruce Priddy Reply

    Hi I’m new to this site. I had bladder cancer in 2006 and have a neo bladder. Most of the time I’m fairly dry but I still wet myself on irregular occasions. I used to wear pads but have recently stopped using them. I found they made me lazy. I live with incontinence or the risk of being wet daily. Reading some of the experiences of other people who also suffer from incontinence makes me feel less alone. I hope to get some comfort from being in touch with other people who suffer as I do

  2. eleni Psarompa Reply

    Although I am not regretting my decision to opt for neobladder instead of stoma, 14 months after the operation, incontinence is a major problem. It is controlled during the day but only in very ‘quiet’ days. In days when I am active with walking, swimming, driving, I find myself in the same condition as I was 3 months after the operation, not able to retain any urine. I would like to hear from others with similar experience.

  3. mark greatrex Reply

    Hi all i have had my neobladder for 5 months now and although dry during the day i still suffer incontinence at night , I sleep in my “plastic pants ” and have 2 attends pads in but it really gets to me when i’m wet or it leaks to the bed ,does it ever get better?

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