Total cystectomy How it affects your daily life and ways to adapt easily

Complete bladder removal is a major surgical procedure that drastically changes a patient’s life, both physically and emotionally. After the surgery, patients face many challenges adapting to the new changes in their body and daily routines.This article on Dalili Medical will explain all the important details about the impact of complete bladder removal on your health, along with the most important tips and steps to help you live a normal life and regain your confidence and activity.If you or a loved one is about to undergo this surgery, it’s essential to know this information so you can be prepared and manage the situation in the best possible way.

Does Bladder Cancer Spread After Removal?

The spread of bladder cancer after removal depends largely on the stage at which the cancer was diagnosed. If the cancer is detected early, when the cancer cells are confined to the superficial layers of the bladder, the chance of recurrence or spread after surgery is very low. However, if the cancer is discovered at an advanced stage—when it has invaded the bladder muscles or surrounding tissues—there is a higher risk that the disease may come back or spread after the operation.

1. Why Might a Woman Need to Have Her Bladder Removed?

The main reason is usually bladder cancer or chronic bladder diseases that do not respond to medication or other treatments.

2. Does Bladder Removal Change the Body’s Appearance?

In some cases, the patient may need a small opening in the abdomen called a stoma to drain urine. This can affect the external appearance and may also impact the patient’s psychological well-being due to the change in body image.

3. Does the Surgery Affect Sexual Relationships in Women?

The surgery can affect nerves and tissues near the bladder, which may cause some sexual difficulties. However, with medical follow-up and psychological support, many patients improve and regain a normal life.

4. How Long Is the Recovery Time After Surgery?

Recovery time varies from patient to patient depending on the type of surgery and their health condition but usually takes between 6 weeks to several months.

5. Can There Be Problems with Urination After Bladder Removal?

Yes, some patients experience difficulties controlling urine or leakage, which requires ongoing medical monitoring and appropriate treatment.

6. Is Bladder Removal Surgery Risky?

Any major surgery carries potential risks, but with an experienced medical team and careful pre- and post-operative care, these risks are significantly reduced, and recovery tends to be easier.

7. Should Patients Stop Certain Medications Before Surgery?

Doctors usually advise patients to stop certain medications, especially blood thinners, before surgery to reduce the risk of bleeding. This depends on each patient’s specific case.

8. Can the Bladder Grow Back After Removal?

No, once the bladder is partially or completely removed, it cannot be restored or regrown.

Should Medications Be Stopped Before Bladder Removal?

The medical team often instructs patients to stop certain medications or supplements, such as blood thinners, before surgery to avoid bleeding complications and ensure safety during the operation.

Can Patients Return to Normal Life After Bladder Removal?

Yes, after recovery and adjusting to the new way of urine drainage (such as using a stoma or a urinary diversion), patients can return to their normal lives, work, and daily activities, although some lifestyle adjustments may be necessary.

Why Is Bladder Removal Surgery Performed?

Bladder removal surgery is usually done in cases such as:

Bladder cancer that has spread within or beyond the bladder.
Some congenital conditions causing urinary problems.
Chronic infections or neurological disorders not responding to standard treatments.

If the tumor is small and localized, the surgeon may remove only part of the bladder, but if the cancer is widespread, complete (radical) bladder removal is performed.

What Is the Reason for Removing the Bladder?

Radical bladder removal is usually performed to save the patient’s life, especially in cases of invasive bladder cancer. The surgery not only removes the bladder but also any affected lymph nodes or adjacent organs to prevent cancer recurrence.

How Does Bladder Removal Affect Sexual Life?

Effects on Men:

Erectile dysfunction may occur due to nerve damage during surgery.
Some men experience problems with ejaculation or sexual performance after the operation.

Effects on Women:

Vaginal dryness or contractions may occur, affecting comfort during intimacy.
Changes in sensation or sensitivity can result from nerve involvement.

Psychological Effects:

Fear of pain, anxiety about body changes, and stress may reduce sexual desire and cause relationship issues.
Psychological support and medical follow-up can help improve and adapt to these changes.

Are There Alternatives to Bladder Removal?

Yes, in some cases doctors may use bladder-preserving treatments such as:

Chemotherapy
Radiation therapy
Or a combination of both

However, the choice depends on the patient’s condition and disease severity, so consult your doctor to determine the best treatment plan.

How Is Urination Managed After Bladder Removal?

After bladder removal, an alternative urinary pathway is created by:

Installing an external urine collection bag (stoma) attached to the abdomen.
Or constructing a neobladder (artificial bladder) from a segment of the intestine, allowing more natural urination.

Can Bladder Cancer Return After Removal?

Yes, bladder cancer can recur after removal, but the rate is low, ranging from about 1% to 8% according to studies. Therefore, regular follow-up and check-ups are essential for early detection if the cancer comes back.

How Long Does the Hospital Stay Last After Bladder Removal?

The hospital stay depends on the surgery type:

Minimally invasive (laparoscopic or robotic) surgery usually requires at least one night in the hospital.
Open surgery may require a longer stay, sometimes a week or more, depending on recovery.

During hospitalization, doctors monitor recovery and ensure no complications arise. Patients needing a stoma will be taught how to manage it properly.

How Long Does Bladder Removal Surgery Take?

The surgery typically lasts around 6 hours, but this can vary based on the patient’s condition and the complexity of the procedure.

Is Bladder Removal Considered Major Surgery?

Yes, it is a major surgery because it involves removing part or all of the bladder and requires precise medical care before and after the operation.

Can a person live without a bladder?
Yes, a person can live without a bladder, but there must be an alternative system for urine drainage, such as:

Using an external bag to collect urine,
Or creating a neobladder (an artificial bladder) from a part of the intestine.

After the surgery, the patient goes through an adjustment period and gradually gets used to the new way of urinating. Despite this change, most daily activities can be continued normally.

Why is bladder removal surgery performed?
Bladder removal surgery is usually done to treat bladder cancer, especially when the cancer is widespread or cannot be treated by other methods. In some cases, the surgery is performed to treat congenital problems or chronic diseases affecting the urinary system.

Factors affecting the success of bladder removal surgery:

Cancer stage:
The earlier the cancer stage, the higher the chances of successful surgery and full recovery. If the cancer has reached the muscles or surrounding tissues, recovery becomes more difficult and the success rate decreases.
Type of cancer:
Tumors confined to the superficial layers of the bladder (non-muscle invasive) have higher recovery rates compared to tumors invading the bladder muscles.
Patient’s overall health:
Patients who are healthy and can tolerate surgery and recover quickly have better chances of success.
Presence of chronic diseases:
Diseases like heart problems or diabetes may affect the body's ability to recover and increase the risk of complications.
Surgeon and medical team’s experience:
The skill and experience of the surgeon greatly reduce risks and improve the chances of success.

Risks and complications of bladder removal surgery:
Bladder removal is a major surgery, and like any major operation, it may cause complications that vary depending on the patient’s condition and surgical method.

Immediate (short-term) complications after surgery:

Severe bleeding during or after surgery.
Infection at the surgical site or inside the abdomen.
Blood clots in the legs or lungs, which can be dangerous.
Problems with wound healing or hernia at the surgical site.

Medium and long-term complications:

Urinary control problems:
After bladder removal, urinary leakage or incontinence may occur due to the new urine drainage method.
Digestive system changes:
If a portion of the intestine is used to create a new bladder, digestive issues or problems absorbing food may appear.
Effects on sexual function:
Men may experience erectile dysfunction; women may face vaginal dryness or sensory issues.
Body appearance changes:
Having a urinary stoma (an opening for urine drainage) may affect the patient’s psychological state and body image.
Psychological effects:
Anxiety or depression due to physical changes may affect self-confidence and social relationships.
Recurrent urinary tract infections:
Due to changes in urination method or the presence of a stoma.
Kidney problems:
Urine may flow back to the kidneys or put pressure on them, affecting their function.
Urinary tract stones:
Caused by urine residue or changes in urine composition.
Electrolyte imbalances:
Using intestine for bladder reconstruction may disrupt mineral and salt balance.
Narrowing or blockage at ureter connections:
May require medical intervention to fix.
General fatigue and weight loss:
Due to the size of the surgery and bodily changes.
Delayed wound healing:
Especially in smokers or diabetic patients.
Hormonal changes:
In rare cases.
Internal scar tissue formation:
Causing pain or obstruction in urinary or intestinal tracts.
Anesthesia risks:
Such as breathing problems or allergic reactions.
Long-term digestive effects:
Chronic constipation or diarrhea due to intestinal use.
Lifestyle changes:
Need to adapt to having a urinary stoma or permanent catheter.
Vitamin deficiencies:
Like vitamin B12 deficiency due to altered intestinal absorption.
Risk of new cancers:
In rare cases, new tumors may develop in the urinary tract.

What Happens Before Bladder Removal Surgery?

Before the bladder removal surgery, you will meet with your doctor or the healthcare team who will oversee the operation. During this time, your overall health will be thoroughly assessed to ensure you are ready for surgery. This includes:

Checking vital signs such as temperature, pulse, and blood pressure.
Discussing the type of surgery best suited for your condition.

Types of Bladder Removal Surgery:

Partial Cystectomy:
The surgeon removes only part of the bladder, usually along with nearby lymph nodes to check if cancer has spread. Lymph nodes are small tissue clusters that help the immune system fight disease. After that, the remaining bladder is repaired.
Simple Cystectomy:
In this type, the surgeon removes the bladder without affecting surrounding tissues. This is used for non-cancerous issues such as:

Neurogenic bladder
Radiation cystitis
Urinary fistula
Severe interstitial cystitis

Radical Cystectomy:
This is a complete removal of the bladder along with surrounding lymph nodes.

In men: the surgeon may remove the vas deferens, prostate, and seminal vesicles.
In women: typically includes removal of the uterus, fallopian tubes, ovaries, cervix, and sometimes part of the vaginal wall.

Important Advice Before Surgery:

Inform your doctor about all medications you take, including prescriptions, over-the-counter drugs, and herbal supplements.
Some medications like aspirin, anti-inflammatory drugs, and blood thinners can increase bleeding risk during surgery.
Do not stop any medication without consulting your doctor first to ensure a safe plan.

What Happens During Bladder Removal Surgery?

During the surgery, you will be cared for by a specialized medical team usually including:

Urologist (specialist surgeon)
Anesthesiologist
Specialized nurses

Anesthesia:
You will receive general anesthesia, which means you will be completely unconscious, won’t feel pain or remember anything during the operation, and won’t be able to move.

Surgical Techniques:

Open Cystectomy:
A large incision (about 15–18 cm) is made in the lower abdomen between the belly button and pubic bone. The surgeon inserts their hand through this opening to remove the bladder or the affected part.
Laparoscopic or Robotic Cystectomy:
This is less invasive, involving 5 or 6 small incisions (each about half an inch or less). The abdomen is inflated with carbon dioxide gas to create working space. Tiny instruments and a camera are inserted through these incisions to perform the surgery.
In robotic surgery, the surgeon controls robotic arms from a console, allowing for precise movements and a 3D view.

After Bladder Removal: Reconstructing Urinary Tract

Once part or all of the bladder is removed, the urologist reconstructs a new way for urine to leave the body. Options include:

Ileal Conduit (Urostomy):
A small piece of the small intestine (ileum) is used to create a passage. The ureters (urine tubes) connect to one end of this piece, and the other end is brought out to the skin surface as a new opening called a stoma, usually near the belly button. Urine drains continuously into an external plastic bag attached to the stoma.
Continent Cutaneous Reservoir:
A pouch is made from parts of the small and large intestine to store urine inside the body. The ureters connect to this pouch, which then connects to a small stoma on the abdomen. Urine is emptied by inserting a catheter into the stoma regularly. No external bag is needed.
Orthotopic Neobladder (New Bladder):
A new bladder is constructed from a long piece of the small intestine. The ureters connect to this pouch, which is then attached to the urethra (the normal urine exit). The patient can urinate normally by controlling pelvic muscles. Sometimes catheterization is needed to empty the new bladder fully.

What Is Life Like After Bladder Removal Surgery?

You will need a recovery period lasting several weeks. During this time, you will gradually return to your normal daily activities like work, study, and light exercise.

Adjusting to Life After Surgery:

If you have a urostomy bag (external pouch), here are some helpful tips:

Empty the bag before it is half full to keep it comfortable and flat.
Clean the skin around the stoma gently with warm water and mild, fragrance-free soap to avoid irritation.
Change the bag when you wake up and before drinking anything to reduce leaks.
Use special deodorants designed for stomas to reduce odors.
Apply stoma powder when changing the bag to soothe the skin.

How Does Urine Exit the Body After Bladder Removal?

After bladder removal, a new urinary diversion is created. The three main types are:

Ileal Conduit (Urostomy):
A segment of the small intestine creates a passage connecting the ureters to an opening (stoma) on the abdomen. An external bag collects urine continuously.
Continent Cutaneous Reservoir:
An internal pouch made from intestines stores urine. The patient uses a catheter inserted into a stoma to drain urine several times daily, with no external bag.
Orthotopic Neobladder:
A new bladder is constructed and connected to the urethra. Some patients urinate naturally, while others may need catheterization to empty the bladder fully.

Potential Problems After Bladder Removal

After bladder removal surgery, you may experience some complications or symptoms that you should be aware of, including:

Urine Leakage Around the Stoma:
If you have an ileal conduit or an external urinary pouch (any external channel or reservoir for collecting urine), urine may leak around the stoma on the skin. This can cause skin irritation or infection at the stoma site.

Strictures or Scarring in the Ureters or Channels:
Scar tissue can form in the tubes that carry urine from the kidneys to the new urinary system, which may block normal urine flow.
In some cases, urine may flow backward to the kidneys (reflux), increasing the risk of urinary tract infections or kidney stones.

Urinary Incontinence After New Bladder Construction:
Some people may have trouble controlling urine after having a new bladder made from intestinal tissue.
With exercises and muscle retraining, this can improve. In some cases, specialized tests are done to determine the best treatment.

Changes in Blood Chemical and Vitamin Levels:
Surgery using parts of the intestine can cause changes in blood fats and chemicals, leading to problems like diarrhea, kidney stones, or vitamin B12 deficiency.

Sexual Complications:
Bladder removal surgery may increase the risk of erectile dysfunction in men or decreased sexual desire in women. However, surgical or medical treatments can help improve these issues.

Healthcare and Follow-up After Bladder Removal

After surgery, it is essential to regularly follow up with your urologist to ensure your health and safety. Important tips include:

Care of the Stoma and Catheter:
An enterostomal therapy nurse (ET nurse) will assist you with cleaning the skin, correctly placing devices, and will help if you experience any problems with catheter insertion.

Regular Vitamin B12 Testing:
If intestinal segments were used in the surgery, you should have an annual blood test to monitor your vitamin B12 levels starting five years after the operation.

When to Contact Your Doctor Immediately?

Do not hesitate to contact your doctor if you notice any of the following:

Fever or high temperature
Pain in the mid-back or side of the body
Blood in the urine
Severe skin irritation around the stoma
Difficulty inserting the catheter by yourself (this may indicate pouch problems or urine leakage risk)
Persistent vomiting or abdominal pain (which might be signs of intestinal blockage due to scarring or internal issues)

The Medical Team for Bladder Removal Surgery

The main treating physician is usually a urologist — a specialist in diagnosing and treating urinary tract problems in men and women, including diseases of the bladder, kidneys, prostate, and urinary system in general.
For complex surgeries or urinary diversions, the team may include anesthesiologists, specialized nurses, and sometimes general surgeons depending on the case.