Cystistat bladder instillation for painful bladder syndrome (interstitial cystitis)

What is the evidence base for this information?

This leaflet includes advice from consensus panels, the British Association of Urological Surgeons, the Department of Health and evidence based sources; it is, therefore, a reflection of best practice in the UK. It is intended to supplement any advice you may already have been given by your urologist or nurse specialist as well as the surgical team at Addenbrooke’s. Alternative treatments are outlined below and can be discussed in more detail with your urologist or specialist nurse.

What does the procedure involve?

This procedure involves instilling a drug into the bladder to help treat cystitis, due to either repeat urinary tract infection or painful bladder syndrome, with the aim of also improving symptoms such as bladder pain, urinary urgency and frequency. It works by aiming to reduce inflammation and discomfort in the bladder. It is also called sodium hyaluronate and is a naturally occurring compound that is found in the bladder lining.

What are the alternatives to this procedure?

For recurrent urinary tract infections, this treatment is reserved for patient who have tried and failed other methods. Women with recurrent urinary tract infections will already have tried simple measure (e.g. increasing water intake and vaginal oestrogen treatment), and most likely have also tried medical treatment with antibiotics and methenamine (Hiprex) before this treatment is offered. Alternative options for patient with bladder pain syndrome include bladder distension, instillations of Parson’s cocktail in the bladder (a combination of heparin, local anaesthetic and bicarbonate), pain clinic, and in severe disease, removal of the bladder, and diversion of urine away from the bladder.

What should I expect before the procedure?

Before you arrive, do not drink anything for at least four hours before your appointment. If you take water tablets (diuretics), do not take any on the morning of your appointment, but continue to take any other medication you usually take (unless your doctor has advised you otherwise).

On arrival to the clinic, you will be asked to pass urine which will be tested to ensure that you do not have an infection in the urine. If you do, your treatment will need to be postponed for one week while you are treated with antibiotics.

Please be sure to inform your urologist in advance of your surgery if you have any of the following:

• an artificial heart valve
• a coronary artery stent
• a heart pacemaker or defibrillator
• an artificial joint
• an artificial blood vessel graft
• a neurosurgical shunt
• any other implanted foreign body
• a prescription for Warfarin, Aspirin, Rivaroxaban, Dabigatran, Apixaban, Edoxaban or Clopidogrel , Ticagrelor or blood thinning medication
• a previous or current MRSA infection
• high risk of variant CJD (if you have received a corneal transplant, a neurosurgical dural transplant or previous injections of human derived growth hormone)

What happens during the procedure?

You will need to lie down throughout your treatment. A fine plastic tube (catheter) will be passed into the bladder and the medication (50mls) will be given slowly through it. The catheter will then be removed. You will be asked to hold the urine in your bladder for a minimum of 15 minutes and a maximum of 30 minutes. You will then be asked to empty your bladder. The instillations are planned for once a week for six weeks, then once per month for six months. You will be reviewed after six to eight weeks of treatment.

What happens immediately after the procedure?

Once your treatment has been completed, you will be able to go home. You will be asked to complete two questionnaires assessing your symptoms and response to treatment.

Are there any side effects?

Most procedures have a potential for side effects. You should be reassured that, although all these complications are well recognised, the majority of patients do not suffer any problems after a urological procedure.

Please use the check boxes to tick off individual items when you are happy that they have been discussed to your satisfaction:

Common (greater than one in 10)

• Temporary discomfort on passing urine (this should settle after 1-2 days, a hot water bottle or painkillers such as Paracetamol should help)
• Frequency or urgency

Occasional (between one in 10 and one in 50)

• Nil

Rare (less than one in 50)

• Nil

What should I expect when I get home?

If you think you have a urine infection or if you develop a high temperature with backache, it is important to contact your GP and get treatment with antibiotics.

What else should I look out for?

The treatment is given weekly for four weeks. If successful, the treatment is then continued on a monthly basis. You maybe asked to complete questionnaires before and after treatments to help assess the usefulness of the treatment.

Are there any other important points?

An outpatient appointment will be arranged for you in due course to assess the response to treatment.

Driving after surgery

It is your responsibility to ensure that you are fit to drive following your surgery.

You do not normally need to notify the DVLA unless you have a medical condition that will last for longer than three months after your surgery and may affect your ability to drive. You should, however, check with your insurance company before returning to driving. Your doctors will be happy to provide you with advice on request.

Privacy and dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high tech equipment and / or specialist one to one care is required.

Hair removal before an operation

For most operations, you do not need to have the hair around the site of the operation removed. However, sometimes the healthcare team need to see or reach your skin and if this is necessary they will use an electric hair clipper with a single-use disposable head, on the day of the surgery. Please do not shave the hair yourself or use a razor to remove hair, as this can increase the risk of infection. Your healthcare team will be happy to discuss this with you.

References

NICE clinical guideline No 74: Surgical site infection (October 2008); Department of Health: High Impact Intervention No 4: Care bundle to preventing surgical site infection (August 2007)

Is there any research being carried out in this field at CUH?

There is no specific research in this area at the moment but all operative procedures performed in the department are subject to rigorous audit at a monthly audit and clinical governance meeting.

Who should I contact for more help or information?

Oncology nurses

Uro-oncology nurse specialist
01223 586748

Bladder cancer nurse practitioner (haematuria, chemotherapy and BCG)
01223 274608

Prostate cancer nurse practitioner
01223 274608 or 01223 216897

Surgical care practitioner
01223 348590 or 01223 256157

Non-oncology nurses

Urology nurse practitioner (incontinence, urodynamics, catheter patients)
01223 274608

Urology nurse practitioner (stoma care)
01223 349800

Urology nurse practitioner (stone disease)
07860 781828

Patient advice and liaison service (PALS)

Telephone: 01223 216756
PatientLine: *801 (from patient bedside telephones only)
Email PALS

Mail: PALS, Box No 53
Addenbrooke's Hospital
Hills Road, Cambridge, CB2 2QQ

Chaplaincy and multi faith community

Telephone: 01223 217769
Email the chaplaincy

Mail: The Chaplaincy, Box No 105
Addenbrooke's Hospital
Hills Road, Cambridge, CB2 2QQ

MINICOM System ("type" system for the hard of hearing)

Telephone: 01223 217589

Access office (travel, parking and security information)

Telephone: 01223 596060

What should I do with this leaflet?

Thank you for taking the trouble to read this patient information leaflet. If you wish to sign it and retain a copy for your own records, please do so below.

If you would like a copy of this leaflet to be filed in your hospital records for future reference, please let your urologist or specialist nurse know. If you do, however, decide to proceed with the scheduled procedure, you will be asked to sign a separate consent form which will be filed in your hospital notes and you will, in addition, be provided with a copy of the form if you wish.

I have read this patient information leaflet and I accept the information it provides.

Signature. . . . . . . . . . . . . . . . . . . . . . . . . Date. . . . . . . . . . . . . . . . . . . . . . . . .