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Manage your Inflammatory Bowel Disease with myIBD. myIBD is a new app, developed by doctors and patients for people living with diseases like Crohn's and Colitis. It's packed with features that will help you and your doctor better understand
Track. myIBD makes recording the important information easy. Whether you are feeling great or feeling lousy, keep track of the day-to-day information that you and doctor need. Your mood, appetite, pain, and trips to the bathroom can be recorded in moments.
Chart. myIBD allows you to view your entries over time either as a graph or simple text. This may provide you with a new perspective on how you are managing your illness.
Learn. myIBD contains valuable information about inflammatory bowel diseases. When it comes to living with an IBD, knowledge is important.
An Inflammatory Bowel Disease can make your life increasingly complex; myIBD makes managing it easier.
What's New in Version 2.1
- iOS 8.1 support
The following website http://www.ibdrelief.com is full of amazing information and links.Please see below for a extract from the site.
What is inflammatory bowel disease (IBD)?
IBD - or inflammatory bowel disease - is the name used to describe a group of conditions which include Crohn’s disease and ulcerative colitis (UC). These are the two most common forms of the disease. Rarer forms include lymphocytic colitis and collagenous colitis which tend to be referred to under the single term of microscopic colitis.
IBD is a chronic (lifelong) condition in which parts of the gastrointestinal tract (the gut) become inflamed. Where you get the inflammation depends on which type of IBD you have.
What is Crohn’s disease?
In Crohn’s disease the inflammation can be found anywhere from the mouth to the anus. It can affect the entire thickness of the digestive tract and may also skip areas - meaning you could have inflammation near you mouth and also in your small bowel but no where in between.
The type of Crohn’s disease you have will depend on where the inflammation is found. You may be diagnosed with more than one type of Crohn’s disease.
Symptoms vary greatly from person to person depending on the type of Crohn’s disease you have but typical symptoms include abdominal pain, diarrhoea, sickness, fatigue, mouth ulcers, anaemia, loss of appetite and weight loss.
What is ulcerative colitis (UC)?
In ulcerative colitis the inflammation is found in the colon (large intestine) and the rectum. Small ulcers can develop on the colon’s lining which produce pus and mucus. This can cause abdominal discomfort and frequent emptying of the colon.
The type of UC you are diagnosed with depends on where the inflammation is found.
- Probiotic brands
- Microbiome: Gut bacteria and IBD - Crohn's disease and ulcerative colitis
- Probiotic foods - ulcerative colitis and Crohn's disease
With thanks to Lulu for telling me about this website. x
Fatigue in IBD
Welcome to the Crohn’s and Colitis UK ‘Fatigue in IBD’ project website. On the fatigue in IBD site you will find information on fatigue in IBD and research findings from the four year Big Lottery Funded study.
We hope that this site will be a helpful source of information for you and help you find ways to manage the daily symptoms you may be facing. We welcome any feedback or stories you would like to share with us to help others also living with Fatigue in IBD. We continue our research and will add new information as it becomes available. Please visit www.fatigueinibd.co.uk
There is the first ever fatigue rating scale for IBD is available at http://www.fatigueinibd.co.uk/questionnaire/
The first ever fatigue rating scale for IBD
In-depth qualitative interviews with our study volunteers confirmed that fatigue was a big issue that had a severe impact on many areas of life. They also confirmed a need for a way of measuring fatigue to enable people with IBD to discuss fatigue with their health care professionals and test interventions and treatment.
Fatigue scales had been used in many other conditions, to help patients and doctors measure levels of fatigue, however there was no scale that had been developed specifically for IBD.
Our fatigue scale –which can be accessed and scored below will enable people living with IBD to:
- self-assess their fatigue and the impact is has on their lives
- more easily raise their fatigue symptoms with healthcare professionals
- assess whether changes in lifestyle are having any impact on fatigue levels
- discuss their fatigue with family, friends and employers
So please complete the form. it is available as a PDF which can be printed out from http://www.fatigueinibd.co.uk/questionnaire/
My Wellness Journal - Health records in your pocket
My Wellness Journal is a mobile app that allows you to safely and securely store yours and your family member’s medical information on your iOS devices. Consolidate your family’s health information, including everything from medical history and medications to diagnostic and exam files and more, in a 100 percent portable application.
My Wellness Journal makes it easy to keep track and make informed health decisions.
- Enter health information in forms that make it simple to sort and see
- Save notes about your doctor visits
- Record your questions for the doctor/ nurse visit
- Search past health care professionals by specialisation
- Consolidate your family’s health data in one app - Easy-to-use menus to record medial history, medications, vaccinations, family history, procedures and much more
- Integration with your calendar and contacts
- Utilizes your camera to snap and store information and print off at a later date
My Wellness Journal – Health records then and now!
About IBD Passport
IBD passport has been developed by Kay Greveson, IBD nurse working at the Royal Free hospital in London. It is the first non-profit website dedicated to providing information for patients travelling with inflammatory bowel disease (IBD). The aim is to provide evidence-based information gathered from national & international guidelines, published research, government publications and patient organisations to provide straightforward information regarding travel and inflammatory bowel disease. The source of information on our site can be found at the foot of each page. The content of this site is updated yearly to ensure accuracy.
Please visit http://www.ibdpassport.com/
Ulcerative colitits and Crohn's Disease are the two main forms of Inflammatory Bowel Disease (IBD).
Some websites and charities have proved invaluable in managing the quality of life of Crohn's sufferers. Here are some useful organisations that provide information and support on living with Crohn's and ulcerative colitis.
- Crohns and Colitis UK:
Information line, call: 0845 130 2233 or 01727 734 470,
A member of staff will be able to help with the following:
- Tests and Diagnosis
- Dietary questions
- Employment issues
- Accessing welfare benefits
- Finding support from others with the condition.
- Ileostomy and internal pouch support group:
Freephone: 0800 0184 724
Telephone: 028 9334 4043
- Colostomy Association:
Tel: 0800 328 4257 (24 hour helpline)
- Crohns Zone:
- Crohn's in Childhood research Association (CICRA):
For Crohn's sufferes and their families
Tel: 0208 949 6209
- Ostomy Lifestyle:
Provide support, advice and information to anyone affected by stroma surgery on their bowel and urinary system.
Tel: 0800 731 4264
- Bladder and bowel foundation:
Tel: 0845 345 0165
- CORE Charity
Raising awareness and funding research into gut and liver disease
3 St Andrews Place
020 7486 0341
Leisure and Lifestyle Insurance
Call 08445 763029 and get a quotation today
Our specialist travel insurance is designed for:
Customers with an internal pouch or stoma following an ileostomy, colostomy, urostomy, mitrofanoff or PEC's
Customers with gastro-intestinal conditions including ulcerative colitis, FAP and crohn's disease
Customers who have had surgery including a restorative prolectomy, ileostomy or colectomy
Other useful websites
Elemental 028 Extra
Nutricia (Elemental 028 Extra)
If you would like information on the Elemental 028 Extra range please contact your Doctor or Dietitian.
The European Federation of Crohn's & Colitis Associations:
Crohn's & Colitis UK / The National Association for Crohn's & Colitis Disease (NACC)
Children with Crohn's & Colitis
The Continence Foundation
Irritable Bowel Syndrome Network (Formerly known as The Gut Trust)
Disability Rights UK
British Colostomy Association
RADAR Keys and Toilet Access
Radar NKS Key
Disability Rights UK
49-51 East Rd
The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country. Alternative costs: With VAT - £5.40 European delivery - £5.40 Rest of world delivery - £6.50
Important - We only sell the Radar NKS Key to people who require use of the toilet facilities due to their disability or health condition. By purchasing a key VAT free you are declaring yourself eligible to claim VAT relief and that the key is for your domestic and personal use only. The key is only available VAT free for individuals, if you are buying on behalf of an organisation such as a care home then you must pay VAT.Bulk orders of over 9 keys are available from the Radar Key Company
Tel: 020 7250 8191
Monday to Friday 10.00-12.30 and 1.30 to 4.00
The 'can't wait card' is a national membership scheme available for people with a bladder or bowel problem. The card states that the holder has a medical condition and needs to use a toilet quickly. This card can be obtained from the Crohns and Colitis Foundation.
In London, toilet facilities in Marks & Spencer, Tesco, John Lewis, Sainsburys and Asda are available to use without the need to buy anything as part of the Mayor of London’s Open London scheme.
For general information about existing public toilets in your local area, please see the list of public toilets, to be redirected to information in your local borough.
Tube toilet map
To help plan your day, TfL also produce a range of accessibility guides that includes a Tube Toilet map, which details the locations of toilet and baby changing facilities on the Tube network.
Non TFL Managed Stations
Barking in walkway, inside gateline
Canning Town in bus station
Cannon Street in National Rail station
Charing Cross in National Rail station
Clapham Junction in Brighton Yard ticket hall
Denmark Hill behind ticket office
Ealing Broadway in National Rail station
Earl’s Court on the right hand side as you exit the gate line
Euston in National Rail station
Golders Green in bus station
Green Park in subway
Heathrow Terminals 1,2,3 at street level
King’s Cross St. Pancras in King’s Cross National Rail station
Lewisham in National Rail station
Liverpool Street in National Rail station
London Bridge in National Rail station
Marylebone in National Rail station
North Greenwich in bus station
New Cross on platform C
Old Street in subway
Paddington in National Rail station
Piccadilly Circus in subway
Richmond on lower concourse
Stratford International in National Rail station
Upminster in National Rail station
Vauxhall in bus station
Victoria in National Rail station
Walthamstow Central in bus station
Waterloo in National Rail station
Watford Junction in waiting area on platform 6, accessible toilet in ticket hall
Westminster in subway
Wimbledon in National Rail station
Toilet facilities at stations are not managed by Transport for London.You may be charged for using these facilities. Ask staff for information.
The following toilets charge a fee ranging from 10p to 50p:
The following stations have baby changing facilities inside the toilets:
Finchley Road (unisex toilet)
Golders Green (unisex toilet)
Heathrow Terminals 1,2,3
Heathrow Terminal 5
Hounslow East (unisex toilet)
Kilburn (unisex toilet)
Richmond (unisex toilet)
St. John’s Wood (unisex toilet)
West Hampstead (Jubilee line only - unisex toilet)
Wood Lane (unisex toilet)