Information Day 2011

10:00  Coffee on arrival

10:30  Welcome & domestics

10: 40  Introduction –  Bruce George, Kangaroo Club Chairman & Colorectal Surgeon ORH

Mr George outlined the key factors regarding laparoscopic (key-hole) surgery:

Benefits:

• Complication decrease

• Hospital stay reduced

• Eating and drinking earlier

• Reduced Adhesions and hernias

• Improved quality of life

• Easier re-do surgery after colectomy

Problems:

• Cost

• Time

• Equipment

• New Complications (hernia, thermal injury, compartment syndrome (reduced blood supply), volvulus)

• Learning Curve for Surgeons

Number of people having laparoscopic surgery is increasing. Commitment and Team Work is required by Surgeons, Anaesthetists, Theatre Nurses and Technical Support from industry.
(Websurg is a website where you can watch surgical videos.)

To illustrate the importance of team work and how with poor team work things can go wrong, Mr George talked about his 24 hour cycle ride to Paris in 2010 to raise funds for OCCTOPUS (Oxford Colon Cancer Charity). Due to a number of problems (missing planned channel crossing, bad weather, getting lost, separated, different speeds) this was unfortunately not achieved.

The ride was being repeated on the evening of the Information Day – leaving London at midnight! The Committee wished Mr George and his Team well for their successful completion.

Answers to questions asked:

• New techniques in repairing fistulas in pouches – taking muscle tissue to use is successful in extreme cases.

• Laparoscopic Surgery can either be fully laparoscopic or partly laparoscopic. Risk of complications is currently the same as open surgery V laparoscopic.

• Technically open surgery is easier that forming a pouch laparoscopically.

• Currently there is no work undergoing on long term pouches. There are pouch surveillance clinics to keep check on this. Vitamin B12 should be checked annually.

• Using special liquids poured in to the abdomen at the end of an operation can reduce adhesions.

11:15  The Positives and Negative of Pouches – Marianne Guirgis, SCF Gastroenterology ORH

Pouchitis is diagnosed from symptoms, frequency, flexisigmoidoscopy and only occurs in ulcerative colitis patients. Pouchitis can reoccur in 50% of patients. Chronic Pouchitis will require steroids and medication and in extreme cases the removal of the pouch. The cause of pouchitis is the change of bacteria in the pouch.
Positives:

• Same quality of life as normal

• Avoids medication

• No Stoma

Negatives:

• Pouchitis

• Irritable Pouch Syndrome

• Bile Salt Diarrhoea

Irritable pouch syndrome

Recent diagnosed symptom similar to irritable bowel syndrome and may be present at the same time as pouchitis.

Bile Acid Malabsorption
Treated with drug therapy to reduce diarrhoea.

The full presentation can be viewed by clicking here: POUCHES_2011

Answers to questions asked:

Single antibiotics are used initially to treat pouchitis, but these can produce resistance and some people cannot tolerate them. To reduce resistance you can swap antibiotics, but these are not for long term use.

Upper GI problems are not specifically related to the pouch.

A type of Arthritis can be linked to Inflammatory bowel disease.

Stool transplants are performed for clostridium dyfiscile patients who do not respond to drug treatment. A stool from a family member is transplanted to reduce the bacteria in the bowel.

12:00  VSL#3 – Carl Phillips, Ferring Pharmaceuticals

VSL#3 Probiotic has been around for a number of years. Has to be kept in the fridge. Used for the remission of Pouchitis and contains 450 billion live freeze-dried bacteria.

Available by NHS Prescription for a pack of 30 via the Chemist. Can be purchased via the Ferring website.

Only probiotic in the BSG IBD Guidelines for use in Chronic Pouchitis.

The Probiotic balances the bacteria in the gut and if you stop taking it the balance in the gut will change.

Website: www.vsl3.co.uk

12:10  AGM & intro to KC website & Forum

12:30  Lunch

13:45  Practical Pilates –   Hilary Warren, Pilates on the Green

Pilates is for everyone. Movements are precise, but you need to think about what you are doing. The exercises need to be adapted to suit you. If it hurts don’t do it. Pilates are a group of exercises to strengthen your muscles. It is non-competitive. Recommended twice a week, but once is great.

Pelvic floor exercises, breathing and abdominal muscles are important.

There are no regulations on Pilates teachers. Look for someone who has done a course for at least a year. Ask them where they studied and for how long. They should talk to you about your problems and your health. If they have equipment they will be qualified.

14:15  The Theory – Jane Newman, Specialist Physiotherapist in the Pelvic Floor, ORH

There are 3 abdominal muscles. Deep muscles, crossover muscles and outer muscles. You have to start exercising the deep inner muscles first. Both men and women need to strengthen their pelvic floor. Muscles are in a figure of 8. Core muscles need to be kept toned. After being in hospital muscles are weakened and therefore need to be taught to work again. All muscles work better in the morning.

The Oxford hospital patient guides to strengthening pelvic floor muscles for both men and women can be found here:

A guide to the pelvic floor muscles – women

A guide to the pelvic floor muscles – men

14:45  Questions and Answers – Angie Perrin Lead Nurse Colorectal Nursing ORH & Jane Newman

Q. Can I have laprosopcic surgery even if my colectomy was an open procedure?A.

A. Yes, but you would be asked to sign a consent form to say proceed to open surgery if necessary.

Q. What is a pouch fistula?

A. An opening /tunnelling from the pouch.

Q. Where do I choose who and where to have pouch surgery?

A. Choose a Consultant who has undertaken a many pouch operations and research your surgeon well.

Q. Is it possible to develop a bacterial imbalance in the pouch?

A. Pouch surgery will not cause an imbalance, but this may form due to ill health and gut problems. Antibiotics following surgery will kill both the good and the bad bacteria. Eat foods (leafy vegetables) to help promote good bacteria.

Q. How often should you be having scans and internal examinations after pouch surgery?

A. You should have an 10-12 week follow up. You will then be discharged and move to the Nurse led Pouch Clinic each year. This can be undertaken by a telephone pouch discussion. Ulcerative Colitis Patients will have a follow up after 10 years irrespective of whether you have a pouch.

Q. How do I get into the system (for follow ups)?

A. The Surgeon will refer you to the Nurse led Pouch Clinic.

Q. How do I stop narrowing of the pouch?

A. Work on strengthen the pelvic floor muscles through exercise. The pouch can be stretched in clinic by a Doctor or Specialist.

Q. How often is it acceptable to get Pouchitis?

A. Pouchitis occurs more in new pouches. Less common after 5 years. Some people are more prone to pouchitis than others. This will be treated by antibiotics, then referred to the Gastroenterology Team. A re-do operation for pouchitis is not an option.

Q. Do pouch patients suffer with Vitamin B12 deficiency?

A. As the ileum is turned into your pouch some surgeons believe Vitamin B12 is still absorbed, but this is now checked in your yearly bloods. It is believed that Vitamin B12 is stored for 10 years.

Q. What is inflammation in the Pouch?

A. This is known as Pouchitis and is treated with antibiotics. Stopping certain foods can help prevent pouchitis. A dietician can look at your diet closely and advise an exclusion diet. Food diaries can be a good idea to help determine the onset of pouchitis.

Q. If you are constipated should you strain with a Pouch?

A. No. Use positioning and effective emptying techniques. Breath out when trying to push whilst lifting the pelvic floor.

Q. To increase physical strength are push up advisable?

A. These are advanced exercises and people should be build up slowly.

Q. Fluid on an empty stomach avoid gas?

A. Do not avoid taking fluids. You need to pass 1 – 1.5 litres of fluid a day. To achieve this you need to adjust your intake due to climate and activity. Drink regularly.

Q. Do pouch staples have a life expectancy?

A. They are made of titanium and you may pass them out after they have done the job!

15:15  Raffle & Finish

There was plenty of opportunity to meet and chat with (other) pouch owners and their partners during the day.

Next Year