Bladder and Bowel Continence in Adults with Spina Bifida

1. Bladder and Bowel Continence in Adults with Spina Bifida Mrs Ann Wing Dr Richard Morgan Chelsea Westminster Foundation NHS Hospital Trust London UK

2. Bladder & Bowel Continence Review in Spina Bifida Clinic at Chelsea Westminster Hospital. • All patients have a continence assessment when they attend their annual review in the multidisciplinary clinic. • Many will have well established routines which do not need change. • Some need reassurance that all is well. • Some require a complete change of technique to reduce bladder infection. • A few may benefit from a new option or different interventions.

3. Background • Bladder & bowel continence appears to be the most important issue in the lives of adults with Spina Bifida & or Hydrocephalus. • As children some feel it doesn’t really matter! • In adolescence & adulthood this view changes dramatically as these young people develop their social skills. • Attending college, getting & keeping a job, having girl/boyfriends, marriage & pregnancy. All requires good continence control. • Everyone needs continence of bladder & bowel control to have Independence.

4. Introduction • We aim to review patients every 12-18months in the multidisciplinary Spina Bifida clinic at Chelsea Westminster Hospital. • At present we have around 630 Spina Bifida & Hydrocephalus patients, age ranging from 17 – 80 years old. • These numbers have significantly increased in the last 23 years and we have come a long way from our humble beginnings. Journeying from Westminster Children’s Hospital, to Westminster General Hospital and now in a spacious clinical area designed with our clinic in mind.

5. Introduction • Some patients are mobile, others wheelchair users. Most bringing family members or friends with them. So we are able to build up a great rapor with them. • We provide a ‘One Stop’ day review or MOT of continence with Renal Ultra Sounds kidney & bladder, Flexi-cystoscopy, Blood Biochemistry, Urinalysis, specialist Continence Nurse assessment and Urological opinion if required. We are also trying to negotiate a Botox Therapy service.

6. Bladder Continence Products • Around 40 patients still have their Urostomy stoma. Some from the original surgery. • A few are using Penile appliance pubic pressure urinals or sheath & leg bags. • A small number continue to wear pads. • I/D catheters are used by some, but Supra pubic catheterisation is preferable where at all possible. • Quite a few are continent. • The greatest number of patients use the Intermittent catheterisation technique.

7. Intermittent Catheterisation or SIC • For this to be successful, the bladder must be large enough to hold urine for at least 3 hours + at a time. • A Clam Cystoplasty is performed at times to enlarge the patients bladder. This uses a piece of bowel which is stitched on to an open bladder, thus enlarging its capacity. • Catheterisation is performed around 3-4 hourly during the day. • A single use catheter is used for each catheterisation. A few females continue to use metal catheters. • Most patients learn to catheterise themselves, but a few have this performed for them by a carer.

8. Intermittent Catheterisation • If urethral catheterisation is difficult to perform then a Mitrofanoff can be considered. This uses the appendix or piece of bowel which the ureters are attached to, to make a tube. The other end is brought out on to the skin. There are non return valves to stop urine back tracking or leaking out. • There are other surgical interventions eg, Kouch Pouch which involves making a special pouch around the bladder. Catheterisation is carried out urethrally afterwards. • A few require Botox therapy if urethral leakage continues to be a problem after catheterisation.

9. Artificial Urinary Sphincter [AUS] • A few patients have had AUS’s, several have required replacements. • A few have failed. • All patients undergoing this major surgery have thorough assessments in a specialist centre. • All have to be willing to be taught ISC in case of sphincter failure. • Newer surgical procedures have provided exciting potential, but do not seem to have achieved long term success.

10. Continence Management Urinary tract infection or UTI’s can be a complication of incontinence. It is important that urinalysis is carried out to identify the organisms. In clinic we only advise treatment if the patient is symptomatic. It is important that a good fluid regime & bowel management are used to help prevent UTI’s 1/3rd of patients use Long Term antibiotics – either daily low dose or a rotating monthly regime of 3 agents. A variety of disposable single use catheters are available via GP prescription. It is recommended that these single use catheters are used. 2/3rds use Anti-muscarinic agents – Tolterodine, Fesoteridine, Mirabegron [Betmiga], Solifenecin.

11. Chronic Renal FailureBladder Cancer • A few patients have chronic renal failure. • 3 receive renal dialysis. • 3 have had successful renal transplants, • We diagnosed one of our female patients after a routine ultra sound of her kidneys & bladder with bladder cancer. She was treated with an Ileal Loop diversion & continues to lead an active life. • Sadly a small number of patients have died from bladder cancer. • Therefore we feel it vital, that regular assessment, particularly renal ultra sound, urinalysis & blood biochemistry is most important. • It is also important that UTI’s are managed correctly from birth, as repeated UTI’s over the years do have an impact in later life.

12. Bowel Continence • It would appear that bowel control is just as difficult to achieve. Constipation with overflow the greatest culprit. Most want a constipated type of stool that is controllable. • A good healthy diet, good hydration & exercise [if possible] are the main aims of good bowel control. Cut out the junk food, fizzy drinks & lots of coffee. • At clinic we recommend the regular use of Macrogol [ movicol, laxido] & after emptying the bowel completely, use Movicol daily. • Microlax enema’s can be useful. • Lactulose is just a bowel softener & is often used in conjunction with another agent. • Manual rectal evacuation also used. • Several patients have opted for Colostomy.

13. Bowels • A few patients have IBS & find medication & diet control can be helpful. We advise discussing this with your GP. • There are also anal plugs which some people find useful to stop small leakage. • A small number of patients are unable to use the varying techniques, therefore wear incontinence pads & spontaneously evacuate their bowels in the pads. • As with all these techniques it can be trial & error to find the correct method that works for each individual person.

14. ACE. Anti grade Continence Enema • This is a surgical procedure for performing bowel washouts. A small piece of bowel is isolated & brought to the skin surface. A plastic catheter is then inserted into this. Sometimes the skin surface closes over & a gastrostomy type of PEG tube can be inserted to keep the ACE opening patent. These have to be changed every 3-6 months. They are available from the GP on prescription. • Sit on toilet & make sure all the equipment you need, is to hand. • A solution of Fleet enema, or Bisacodyl is used with 200mls of water. Instil 50mls water initially to lubricate opening, then continue with the enema & remaining water. It can take up to one & half hours for bowel to empty completely. Sometimes we advise the use of liquorice root. Several pieces of root is boiled in 500mls water for 15 minutes. Let water cool, remove root, then use 50mls of solution together with plain water as washout . The liquorice root is natural, thus does not produce abdominal discomfort that people suffer with sometimes. • This technique is performed alternate days, although some can manage it every 3 days.

15. Bowel Washouts • There are a number of companies that produce bowel washout equipment. Peristeen, QuFora, Bard to name a few. Some are more complicated to use than others. • These can be used with patient sitting on the toilet or in bed. • Water is inserted into the container which is attached to the washout pump. The rectal catheter is inserted into the rectum. The water is then hand pumped or electronically pumped up into the bowel. It washes the bowel & then the water with faecal content is released, thus cleansing out the bowel. This is performed daily initially, then performed every 2-3 days as required. These systems are available via GP on prescription.

16. Conclusion • Neurogenic bladder and bowel continence management is much better now than when we began all those years ago. • Continence control is a multi-factorial matter best managed by a multi-disciplinary team readily available for patients when problems arise. • ISC has improved patients independence, but requires to be supported by regular annual reviews to maintain a healthy renal status and best practice.