Nottinghamshire & Derbyshire IA

History of the IA 1956 14th April - Meeting at Birmingham General Hospital. Chairman - Mr. Bryan Brooke. Forty-seven people present, including Dr. Cuthbert Dukes, Mr. R. D. Peters and Mr. E. Lloyd-Lucas from London who were also considering forming a division. Group formed with Doreen Harris as secretary. 25th May - Meeting at St. Mark’s - London Division formed, followed by Northern Division at Leeds. August - first Q T G B Newsletter (forerunner of IA Journal) published. 1957 16th February - joint meeting of representatives from Birmingham, London and Leeds held at Friends House, Euston Road, London NW1 - 9 people attended. Mr. R. D. Peters (London) appointed chairman of the meeting. Association called Q. T. (Great Britain). National committee formed and immediately held first meeting. Secretary - Mr. E. Lloyd-Lucas (London). 19th October - 2nd meeting of National Committee held at Birmingham. Mr. Bryan Brooke elected as chairman. New divisions in Scotland (Edinburgh) and Ireland (Belfast). 7th December - 3rd meeting of National Committee held in London. Subscriptions set at 10/-(50p) per ordinary member; 1/- (5p) to be remitted to National Committee. Name changed to Ileostomy Association of Great Britain. 1958 March - Q T G B Newsletter renamed IA Newsletter. 1959 10th October - membership now 1,200 ordinary members and 150 honorary and associate members. Agreed to appoint National Executive and to draw up Constitution. President: Mr. Bryan Brooke; Chairman of Executive Committee: Dr. Cuthbert Dukes; Secretary: Mr. G. K. Thompson; Treasurer: Mr. M. St. A. Moore. Divisions now in South-West and Wessex. 31st October - first meeting of National Executive Committee. 1960 25th June - Meeting of National Executive Committee approves new constitution for circulation to divisions 31st December - accounts show balance of £382.8.3d (£382.41). 1961 22nd July - Meeting of National Executive Committee considered draft trust deed submitted by Leslie Kingston for ‘Old People’s Fund’. 1963 Bryan Brooke moves from Birmingham to St George’s Hospital London and becomes professor of surgery at London University. 16th March - National Council meeting. President - Professor Bryan Brooke FRCS; Chairman of Executive Committee - Dr. T. D. Kellock FRCP; Secretary - Mr. A. Cape. 4th May - Meeting of National Executive Committee; Research Fund established. 5th October - Meeting of National Executive Committee; agreed that permanent address be 149 Harley Street, London (courtesy Mr. Ian Todd FRCS, who also became surgical adviser to IA). 1964 14th March - National Council meeting agreed to change of name to Ileostomy Association of Great Britain & Ireland. Ileostomy manual produced, entitled ‘A New Life’ 3/6d (17p) to members; 10/- (50p) to others. 1965 6th March - National Council meeting held at Leeds, the first time the meeting been held outside London. Overseas Postal Branch formed with Mrs. Mary Sawdon as secretary (retired April, 1992). August - name of IA Newsletter changed to IA Journal. 1966 1st January - total membership = 3,175: 2,831 ordinary, 169 associate and 175 honorary. 23rd April - Special meeting of the National Executive Committee to consider ‘The future of the Association’. Consideration given to (a) status of divisions and branches; (b) classes of membership; (c) administration and finance - because of rapid growth of Association, is was considered that some ‘paid’ clerical help was required. October - National Secretary, Albert Cape, died. 26th November - Extra-ordinary meeting of National Council resolved that paid National Secretary be appointed. Leslie Kingston appointed w.e.f. 1st January, 1967, at annual salary of £700. Because of legal implications, it was agreed to draw up a Trust Deed incorporating existing Constitution and Rules of Procedure. Central Office moved to Basingstoke, at home of Leslie Kingston. 1967 23rd January - Leslie Kingston in touch with pilot group, and assisting with formation of, Colostomy Welfare Group. 4th March - National Council meeting at Birmingham accepted new Trust Deed. 8th May - National Executive Committee meeting - following referendum of divisions, subscriptions raised to £1, with 50% to be remitted to National Council. 1968 9th March - First meeting of Trustees - Professor Bryan Brooke, Dr. Cuthbert Dukes, Miss A. M. Mitchell, Mr. T. V. Robinson, Professor J. G. Goligher and Dr. T. L. Hardy. 20th July - Leslie Kingston reported inauguration of C.W.G. 1969 8th January - Mr. David Wallace, FRCS, requested the calling of a meeting of ileal bladder members of IA as he thought there was a need for a separate group. 8th March - At National Council meeting, Tom Sturgeon elected Chairman of National Executive Committee. 1970 14th March - National Council meeting held at Edinburgh. Agreed that an employee of a stoma equipment manufacturer or supplier shall not hold any office within Association. 1972 16th September - Executive Committee informed that Urinary Ileostomy Association had been formed with Mr. R. Carroll as President. Joint meeting of executive committees suggested. 1973 7th April - At National Council meeting at Glasgow, Ron Thorp elected National Treasurer in succession to Mr. Moore. 1974 June - Leslie Kingston appointed M.B.E. in Queen’s Birthday Honours. 14th December - National Executive Committee discussed draft constitution for IOA. 1976 October 7th - 9th - first general meeting of IOA held in London. 1977 21st Anniversary of IA. Birthday appeal raised £41,076. 15th April - National Council meeting at Reading - Tom Keily succeeded Tom Sturgeon as Chairman of National Executive Committee. 16th October - Thanksgiving Service held at All Souls, Langham Place, London to celebrate 21st Anniversary of IA. 31st December - total membership now 7,103: 6,231 ordinary, 803 associate and 69 honorary. 1979 1st January - Chris Penney succeeded Leslie Kingston as National Secretary. Central Office moved to office in Basingstoke and, subsequently, to Chris’s home at Chobham, Surrey. 31st October - Professor Lennard-Jones informed EC of meeting to be held on 7th November to set up an association for sufferers of colitis and Crohn’s disease (National Association for Colitis and Crohn’s Disease). 1st December - EC informed re meeting of NACC. Professor Bryan Brooke, Professor Miles Irving, Tom Keily and Chris Penney attended from IA. Chris elected as liaison member of NACC steering committee. 20th April - National Council agrees that IA should join IOA. 1980 28th March - National Council at Liverpool agrees to increase National Executive Committee by election of five elected (regional) representatives - Pat Broughton, David Eades, Rodney Garratt, Bow Heath and Paul Morton. 1981 Silver Jubilee Year. 1982 16th April - National Council meeting at Manchester: Professor Miles Irving FRCS (professor of surgery at the University of Manchester) succeeded Professor Bryan Brooke as National President. 1983 May, 100th edition of Q T G B Newsletter/IA Newsletter/IA Journal published. 1984 1st January - Doreen Harris appointed M B E in New Year’s Honours. Rodney Garratt succeeded Ron Thorp as National Treasurer. Colour advertizing first appeared in IA Journal No. 103. 1985 5th October - National Executive Committee agreed to form special interest group for people with continent ileostomies, thereby recognizing new surgical techniques. 1986 1st January - subscriptions increased to £6 (from £5) for members under 60 and £3 (from £2.50) for members aged 60 and over. Two thirds payable to National Council. First computer (an IBM compatible PC) installed at Central Office. July - Ian Todd FRCS , surgical advisor to IA, became President of Royal College of Surgeons. 1987 30th September - total membership = 8,214: 7,171 ordinary members; 854 associate members; 189 honorary members. 5th October - David Eades succeeded Chris Penney as National Secretary. Central Office moved to Mansfield, Notts. 1988 Desktop publishing (Apple Mac computer and laser printer) installed at Central Office. ‘The Ileostomy Book’ (edited by Sue Bosanko and Chris Penney) published - a collection of articles from previous editions of the IA Journal plus some new features. 1989 31st March - National Council held at University of Ulster, Belfast. The President, Professor Miles Irving, announced that the Bryan Brooke Lecture will be given at future NC meetings, with BNB medal being presented to the speaker. 1990 7th April - National Council meeting at Sheffield - inaugural Bryan Brooke Lecture delivered by Professor Sir Geoffrey Slaney. June - Brenda Flanagan elected to co-ordinating committee of European Ostomy Association. 1991 4th April - National Council meeting at Newcastle upon Tyne. Sudden death of national treasurer, Rodney Garratt. Professor Norman Williams FRCS elected national vice-president. 30th September - total membership = 9,084: 8,206 ordinary members; 722 associate members; 156 honorary members. 1st October - Nick Moon appointed National Treasurer. 1992 1st January - subscriptions increased to £8 (from £6) for members under 60 and £5 (from £3) for members aged 60 and over. £5 and £2 respectively payable to National Council. 11th April - National Council meeting at Norwich: Professor Norman Williams (professor of surgery at the Royal London Medical School) succeeded Professor Miles Irving as National President. Presidential chain of office presented to IA by Professor Irving (purchased by donations to mark his retirement). This was the last IA meeting attended by Professor Bryan Brooke; ill-health prevented his attending future meetings. June - Brenda Flanagan elected president of European Ostomy Association and, ex-officio, member of co-ordinating committee of International Ostomy Association. 7th October - meeting held at Northampton with British Colostomy Association and Urostomy Association to set up co-ordination committee to organize World Ostomy Day on 2nd October, 1993. 1993 16th April - National Council meeting held at Canterbury. Consideration given to changing Constitution to allow people with internal pouches (restorative proctocolectomy) to become members of IA. August - Tom Keily, executive committee chairman, met Charity Commissioner to discuss proposed changes to Constitution and requirements of recently enacted Charities Act, 1992. Advice was that (a) the Constitution could be changed, (b) new objects adopted, (c) local groups should register as separate charities to preserve their autonomy. Legal team at NCVO also consulted. 2nd October - major exhibition and conferences held at Café Royal, London in connection with World Ostomy Day. 4th December - special meeting of National Council held at Royal College of Surgeons to consider amendments to Constitution. Agreed that, following discussions with Charity Commission, (a) name be changed from the ‘Ileostomy Association of Great Britain and Ireland’ to IA; (b) revised objects be adopted; (c) new Constitution (based on model issued by Charity Commission) be approved; (d) model Constitution (based on model issued by Charity Commission) be approved for local groups. 1994 11th April - VIIIth IOA Congress in Adelaide - Brenda Flanagan elected vice president of the International Ostomy Association. 23rd September - discussions held with officers of Royal College of Nursing Stoma Care Nurses Forum re production of ‘Going Home’ booklets. 1995 1st January - Professor Miles Irving, national president 1982-92, awarded knighthood in New Year’s Honours. 7th April - National Council meeting held at Aberdeen. To commemorate IA’s 40th anniversary (14th April, 1996), £40,000 to be raised to support formation of ostomy association in Romania. 1st June - IA Journal 148 published - first issue with full colour throughout. 10th June - meeting held at Royal College of Surgeons with pouch groups and interested people. 2 5th November - second meeting of pouch groups. Agreed to set up a national register of people who have pouch. 1st December - 150th edition of IA Journal published. Two booklets - ‘Going Home - Living with an Ileostomy’ and ‘Going Home - Living with a Pouch’ - published in conjunction with Royal College of Nursing Stoma Care Nurses Forum and distributed to all stoma care nurses in UK. The research projects commenced in conjunction with Royal College of Surgeons, Royal College of Physicians and British Digestive Foundation. 1996 5th February - party of ten surgeons and nurses from Romania visit UK as IA’s guests. Hold two meetings with national project team, visit Hope Hospital, Salford, St Mark’s, London, and Royal College of Nursing. Agreement reached on proposals for developing stoma care and patient support group in Romania. 1st March - 40th anniversary commemorative booklet ‘The Rising of the Phoenix - The Origins of IA’ published and distributed to all members and other readers of the Journal. 12th to 14th April - National Council meeting held in Birmingham (Solihull). 40th anniversary. Bryan Brooke Lecture delivered by Professor Sir Miles Irving ‘Give me the evidence, doctor’ October - members of project team visit Romania to assess needs of ostomists. Application (unsuccessful) submitted to National Lottery Charities Board for grant of £200,000 for Romania project. 1997 February - four nurses from Romania visit UK for three weeks as IA’s guests to undergo training in stoma care. 4th to 6th April - national council meeting held at Exeter. Membership now 9885, including 262 with internal pouches. 16th to 19th June – IXth Congress of International Ostomy Association held at Calgary, Canada. Brenda Flanagan, IA’s international relations secretary, elected IOA president. 1998 New Year’s Honours List - Fred Buckland, national fund raising co- ordinator 1985 - 1993, awarded MBE. 3rd to 5th April – National Council meeting held in Pontypridd. Bryan Brooke Lecture delivered by Professor Sir Leslie Turnberg, immediate past president of the Royal College of Physicians. 18th September – death of Professor Bryan Nicholas Brooke MD, MChir, FRCS, Hon FRACS, aged 83, IA’s president 1956 to 1982. 1st October – Bruce McKenzie succeeded David Eades as national secretary. National office moved to Burton upon Stather, North Lincolnshire 1999 January – MCI Worldcom provides freephone telephone number free of charge – 0800 018 4724. 26th to 28th March – National Council meeting held at Brighton. Bryan Brooke Lecture delivered by Professor John Hermon-Taylor. Tom Keily retired as chairman of the national executive committee, having held the office since 1977. Donald Currie takes the chair. June – Jill Hughes, secretary of North Wales IA, awarded MBE in Birthday Honours. 2001 10th June – death of chairman of the national executive committee, Donald Currie, aged 47. Anne Demick assumed role of acting chairman. 2002 February – Bruce McKenzie, national secretary, advised the national executive committee that he wished to vacate the post when a successor could be appointed. Anne Demick accepted the executive committee’s invitation to take on the post. 22nd March – National Council meeting held in Newcastle-upon-Tyne. Bob Bailey elected chairman of the national executive committee David Eades retired after fourteen years as Journal editor and was succeeded by John Smail. August – death of Irene Betts, founder secretary of North Eastern IA and sometime member of national executive committee. December – new website launched – www.the-ia.org.uk. 2003 March – Donald Currie Research Fellowship closed at £35,000. 2004 3rd April – National Council meeting held in Glasgow. David Eades elected chairman of the national executive committee in succession to Bob Bailey who did not seek re-election. Bryan Brooke Lecture delivered by Professor Neil Mortensen

Forum FAQ’s Q. What should my stoma look like? A. At first, a pinkish red blob protruding a few centimetres from the abdomen, which after 1 - 2 months should shrink to about the size of a 50p piece or smaller. It may not be exactly round, it will always be moist, and it may occasionally bleed slightly if touched. Q. Will it smell? A. Having a stoma does not increase odour. Modern stoma bags are odour-proof. You can gain extra confidence and reassurance if you wish by using one of the deodorizing products available nowadays. You can also take care with what you eat as some foods cause more odour than others – eg. eggs and fish. Q. What can I eat and drink? A. Try to keep to a regular well-balanced diet. It is important to take plenty of fluid in order to prevent dehydration. Some extra salt should be taken as more salt is lost through a stoma than usual. You can help prevent wind by chewing food well (thus taking less air into the digestive system) and by taking care which foods you eat as some create extra wind in the gut (eg. beans, cabbage). Alcoholic drinks (wine and spirit) can be taken in moderation, as can beer and lager, however the latter may produce extra wind. In the early days with your stoma, it is best to eat small, appetizing meals. Q. Will I get food blockages? A. Blockages can sometimes be caused by eating certain high-fibre or less digestible foods such as nuts, sweet corn, celery, or mushrooms. You will know if you have a blockage by experiencing colicky pain, and stoma output will either cease or become watery. If a blockage occurs, stop taking solid food but try to continue taking fluids. If the problem persists more than a few hours, contact your doctor or nurse specialist. Q. How should I empty my drainable ileostomy bag? A. Whilst a few people prefer to stand or kneel in front of the toilet bowl, the majority of men and women sit just down in the usual way. There are no rights or wrongs - do what you are most comfortable with. Q. How should I dispose of my used stoma bags? A. Drainable ileostomy bags should first be emptied in the usual way, and then after removal from the abdomen wrapped in a paper or plastic bag and placed in the household waste. Do NOT attempt to flush used bags down the toilet as this will probably cause plumbing problems. Q. Can I go back to work? A. In the vast majority of cases, yes. However do not try to do too much too quickly – although stoma surgery is more routine nowadays in many hospitals, the formation of an ileostomy or internal pouch still represents major surgery, and you should pace yourself in your recovery accordingly. Your specialist nurse will advise. It will vary from person to person as to the length of time he or she feels fit enough to return to work, the average probably being 2 - 3 months. If possible, return on a part-time basis, or with lighter than usual duties, as this will help the recovery process. The same rule of thumb applies to performing housework, sports, or hobbies. Q. Can I go on holiday? A. Most certainly. However do allow a reasonable period of time for recovery, and consider taking short trips to begin with in order to regain confidence in the management of your stoma away from the familiar surroundings of your home. If you travel abroad, details of obtaining travel insurance may be found elsewhere in this website, or from IA National Office. Q. Why do I still sometimes experience rectal pain, or discharge from the rectum? A. Following ileostomy surgery, a condition known as “phantom rectum” is not uncommon, even if the rectum has been completely removed. The situation normally resolves itself after the wound has fully healed, but it can last several months. If the rectum has not been removed, a feeling of wanting to open the bowels may occur, and sometimes the normal bowel secretion of mucus may be passed. If either situation becomes troublesome, you should contact your nurse specialist.

Travel Insurance When travelling abroad, it is important to have the right type of travel insurance. That insurance must cover all ‘pre-existing conditions’ and it is advisable to obtain this information in writing from the insurance company. Many of our members have obtained satisfactory cover at reasonable costs from the following companies but it is useful to shop around for the best offer. All Clear Travel Insurance www.allcleartravel.co.uk 0845 250 5250 Swinton Insurance www.swinton.co.uk/travel 0800 138 2412 Free Spirit www.free-spirit.com 0845 230 5000 Go Travel Insurance Direct www.gotravelinsurance.co.uk 0870 243 6006 Insure and Go www.insureandgo.com 0870 901 3674 Freedom Travel Insurance www.freedominsure.co.uk 0870 774 3760 Post Office Ltd www.postoffice.co.uk 0800 169 9999 Leisurecare www.leisurecare.co.uk 01793 750150 Axa PPP Healthcare www.axappphealthcare.co.uk 0800 731 4964 Worldwide Travel Insurance www.worldwideinsure.com 0870 112 8100 The following company specialises in cover for people with internal pouch or stoma: Leisure & Lifestyle, www.leisureandlifestyleinsurance.co.uk/specialist- travel-insurance (08445 763029) The following company specialises in cover for cancer patients : Medi Travelcover Ltd., www.meditravelcover.com (01252 782 392) If you are a regular traveller, it is worth considering Annual Travel Insurance cover. Some useful contacts for this are Barclays Bank - Churchill Insurance - Flexicover - Marks & Spencer - MRL Insurance Direct. Please refer to IA leaflet 5 “Travel Tips” for further useful information. TRAVELLING TO EUROPE? The Department of Health has now discontinued the use of E111 Forms which have been replaced by the introduction of a European Health Insurance Card (EHIC). It may take slightly longer to obtain the new card and early application is recommended. * The EHIC entitles you to reduced cost (or sometimes free) healthcare where treatment becomes necessary during a temporary visit to other countries of the European Economic Area or Switzerland. The card is only valid for treatment offered under the state healthcare schemes operating in these countries; it gives you access to treatment under the same terms as people that live in the country you are visiting. * The EHIC is not a substitute for travel insurance. It may not cover all health costs and never covers repatriation costs and you are advised to take out a travel insurance policy in addition to the EHIC. The EHIC card does not cover situations where patients go abroad in order to be treated in hospitals overseas, your Primary Care Trust can advise you further about this. Further information, including a full list of countries covered, together with details of their health systems can be found in the booklet “Health Advice for Travellers” available from the Post Office and on line at www.dh.gov.uk/travellers. It is strongly recommended that you take this booklet with you when travelling as it contains information on what to do if treatment becomes necessary during your trip.

Life Insurance Obtaining Life Insurance following an ileostomy operation can sometimes be difficult. IA have asked Johnson Hunt Wealth Management Limited to provide a specialist advisory service to help its members to get better terms on life assurance and mortgage protection policies. Johnson Hunt search out the best providers and packages to give the best possible chance of obtaining the cover you need and then liaise directly with the Insurance Underwriters. For more information, contact ken.fleming@johnsonhunt.co.uk or phone Johnson Hunt on 01472-362884

Glossary Sampling a body tissue for microscopic examination in order to determine the nature of a disease process. A technique of constructing a surgical connection between the small intestine and the skin that was described by Sir Brian Brooke. An inflammatory condition of the large intestine. The medical and surgical treatment of diseases of the small and large intestine, including the rectum and anus. The large intestine, the final 3-4 feet of the gastrointestinal tract. An examination of the large intestine utilizing a long lighted fibreoptic or video scope. A surgically constructed connection between the large intestine (colon) and the skin. Requires an appliance or "bag" to collect intestinal waste. An inflammatory immune disease of the intestinal tract that causes thickening of the intestinal wall and inflammation of the intestinal lining (mucous membrane). Crohn's Disease can cause problems from the mouth to the anus. Symptoms include abdominal pain, diarrhoea, fever, and weight loss. Complications include bleeding, obstruction, perforation and development of fistulas. A genetic (inherited) disease of the large intestine manifested by the development of many colon polyps that always degenerate into Cancer. An abnormal connection between the intestine and the skin (enterocutaneous), the vagina (enterovaginal or colovaginal), or the bladder (enterovesical or colovesical). A surgically constructed connection between the small intestine (ileum) and the skin. Requires an appliance or "bag" to collect intestinal waste. Ulcerative Colitis or Crohn's Disease. Blockage of the small or large intestine by tumor, inflammation or adhesions. Symptoms usually include cramp-like abdominal pain, nausea, vomiting, abdominal distention and constipation. A defect in the abdominal wall. A surgically constructed reservoir made from the small intestine and connected to the anal sphincter muscles in order to restore intestinal continuity and maintain continence in patients undergoing surgery for ulcerative colitis or Familial Polyposis A hole in the intestine that permits the flow of intestinal contents into the abdominal cavity. Polyp A flat or grape-like growth of benign or malignant tissue in the intestine. The surgical removal of the colon and rectum. The protrusion of the rectum (or intestine) through the anus (or addominal wall). Usually caused by relaxation of normal supporting structures. The last 15cm (6 inches) of the intestinal tract. Surgical Removal of a diseased colon and rectum with the re-establishment of intestinal continuity utilizing an intestinal reservoir. Also called J-Pouch, Parks Pouch, Ileo-anal Pouch, or Ileal Pouch Anal Anastomosis. A visual examination of the lower 12-25 inches if the large intestine using a lighted scope. The internal and external muscle that surrounds the anus. The sphincter permits continence or control over intestinal function. An Inflammatory Bowel Disease that causes inflammation of the lining of the colon and typically causes bloody diarrhoea. A surgically constructed connection between the urinary tract and the skin, usually performed in a patient whose bladder has been removed. Permits the passage of urine from the body. Biopsy Colitis Brooke Ileostomy Colon & Rectal Surgery Colon Colonoscopy Colostomy Crohn's Disease Familial Polyposis Fistula Ileostomy Inflammatory Bowel Disease Intestinal Obstruction Hernia J-Pouch Perforation Proctocolectomy Prolapse Rectum Restorative Proctocolectomy Sigmoidoscopy Sphincter Ulcerative Colitis Urostomy