Downloadable Guides

Jul 09, 2021

Children & Teens 

Growth and Development Issues in Adolescents With Ostomies: A Prmer for the WOC Nurses (7 pages) – This article first appeared in a 2012 issue of the Journal of Wound Ostomy & Continence Nursing. It’s a great overview of the unique needs and experiences of adolescents with ostomies. 

The Ostomy Toolkit: Gutsy Living with a Little Gutsy Help (19 pages) – is a resource specifically for young people, produced by ImproveCareNow – a US-based collaborative community of clinicians, researchers, parents, and patients working to transform the health, care, and costs for children and adolescents with Crohn’s disease and IBD. 

Sam has a Stoma (11 pages) – a colouring book for children, produced by the Colostomy Association in the UK. 

Teen Chat: You and Your Ostomy (19 pages) – a nice pamphlet produced by the Wound Ostomy and Continence Nurses Society (WOCN) in the US. Covers everything from how ostomies work and what to expect after surgery to how to transition back to normal activities. 

Teen with a Stoma (44 pages) – In this booklet produced by Dansac (a Danish ostomy supply company), 3 teens share their stories, revealing how they overcame issues and what’s it like to have a stoma at this age.

Colonoscopies 

Colonoscopy Through the Stoma: A patient’s perspective (12 pages) – a nice overview of having a colonoscopy through the stoma, published by Colostomy UK. 

Colostomies 

A Guide to Living with a Colostomy (17 pages) – A very helpful publication from The  Canadian Association for Enterostomal Therapy (CAET), including pre-op preparation and post-op expectations. 

Colostomy: A practical guide to stoma care (30 pages) – a very readable and comprehensive booklet published by CliniMed, a UK-based company that markets and distributes a range of medical products, specializing in stoma care, urology, and wound care. 

Colostomy Background and Consequences(56 pages) – A fantastic information guide published by Coloplast, filled with lots of illustrations and incredible detail. For example, there are tips specific for Muslim ostomates (about how to observe strict personal hygiene requirements before prayer, and how to avoid leaking during prayers). 

Colostomy Guide (24 pages) – United Ostomy Associations of America (UOAA) has produced this excellent guide about managing and living with a colostomy. 

Colostomy Guide (31 pages) – This thorough guide, published by the American Cancer Society, provides a particularly good understanding of the many different types of colostomies (loop, double-barrel, ascending, transverse, descending, sigmoid, etc.). 

Colostomy surgery and your care (34 pages) – A good overall guide published by St. Joseph’s Heathcare Hamilton, in Canada. Everyone facing or recovering from colostomy surgery should be given a guide like this, 

Diet Guidelines for People with a Colostomy (10 pages) – This is a well organized and easy to follow guide, with tips for eating and drinking with a colostomy, both immediately post-surgery and long term. It’s published by Memorial Sloan Kettering Cancer Center in NYC. 

Leaving Hospital Following Colostomy Surgery (28 pages) – Mississauga Halton LHIN (Local Health Integration Network) of Ontario, Canada has produced this very helpful information booklet. It’s well illustrated and includes advice on taking care of your colostomy, changing pouches, etc., as well as good information on financial assistance and resources available in Ontario and/or Canada. 

Crohn’s / Colitis / IBD 

Better than Ever (11 pages) – This is a nice little booklet written for people with Crohn’s Disease or Ulcerative Colitis who are considering ostomy surgery. The information about living with an ostomy is good but not new, or at least not unique to these patients. What sets it apart is the introductory pages, offering reassuring explanations why their lives are “about to get much better.” It’s published by Crohn’s and Colitis Canada. 

Crohn’s disease: management (23 pages) – Published by NICE (National Institute for Health and Care Excellence) in the UK, this guide “covers the management of Crohn’s Disease in children, young people and adults. It aims to reduce people’s symptoms and maintain or improve their quality of life.” 

Living Well with Inflammatory Bowel Disease: A Self-Management Handbook for Patients & Families with IBD(114 pages) – This handbook is written with young people in mind but is equally informative for readers of any age. It’s the result of collaboration between pediatric IBD experts at Nationwide Children’s Hospital (Columbus, Ohio) and Cincinnati Children’s Hospital Medical Center (Cincinnati, Ohio).  It combines comprehensive clinical knowledge with practical tips and suggestions from parents and kids who are living with IBD. 

Ulcerative colitis: management (30 pages) – Similar to the above, this is the NICE guide about the management of Ulcerative Colitis. Both guides are intended for healthcare professionals, people with IBD, and their families and carers. 

Daily life with an ostomy 

Intimacy After Ostomy Surgery Guide(20 pages) – A fabulous guide to intimate relations post-surgery, prepared by United Ostomy Associations of America, Inc. (UOAA), If you have any concerns, you’ll probably find the answer here. 

Living with an Ostomy (17 pages) – The American Cancer Society has published this handy booklet, covering a range of topics – travelling, talking to people about your ostomy, working and staying active, intimacy and sexuality, and more. 

Travel & Restroom Communication Cards (1 page) – The UOAA has made available these extremely useful cards that you can cut out and keep with you when travelling (to show screening agents at airports) or just out & about (to hopefully gain access to restrooms in a hurry). 

Exercise 

Active Ostomates: Sport and Fitness After Stoma Surgery (24 pages) – Produced by Colostomy UK, this is a great guide to the kinds of exercise and physical activities recommended for ostomates. 

Exercises for Ostomates (3 pages) – This is a nicely illustrated guide produced by the Ileostomy & Internal Pouch Associated of the UK. The series of exercises were devised by a registered physiotherapist who has an ileostomy, and are designed for anyone who’s had surgery leading to a ileostomy, colostomy, urostomy, or internal pouch. 

Your Guide to Recovery after Ostomy Surgery (36 pages) – Written by Sarah Russell, a Clinical Exercise Specialist who has an ostomy, this guide was produced by Convatec and Me+. It provides very detailed instructions, accompanied by good illustrations, and explanations why these exercises can be so helpful, both pre- and post-surgery. 

General information/good overviews 

A Guide to Understanding an Ostomy(72 pages) – A good overview, published by Providence Health Care, which operate several medical facilities in British Columbia, Canada. It’s clearly written and well-illustrated, and I particularly like their chart giving a side-by-side comparison of ileostomes and colostomies. 

A Handbook for New Ostomy Patients (96 pages) – Produced by the Vancouver United Ostomy Association Chapter Inc. This is a very thorough and well written guide, covering all the bases. It was made with the financial support of two ostomy and medical supply companies, but is ad-free. A nice touch! 

Caring for a person with a stoma: A practical guide for staff in nursing and residential homes and for home carers (20 pages) – Published by the Colostomy Association in the UK, this is filled with helpful information specifically written for caregivers, but would be equally appreciated by ostomates themselves. 

Caring for Your Ileostomy or Colostomy (20 pages) – A publication of the Memorial Sloan Kettering Cancer Center. No images, but a good overview of how to manage ileostomies and colostomies. 

Caring for Your Ostomy: What You Should Know(36 pages) – Another really good overview, this one’s published by Providence Health Care, which operates several medical facilities in British Columbia, Canada. It’s clearly written and well-illustrated, and I partcularly like their chart with side-by-side comparisons of ileostomies and colostomies. 

Living with a Stoma(32 pages) – Published by the Colostomy Association in the UK, this guide is helpful if you have questions about daily living with a colostomy (showering, clothing, travelling, etc.). 

New Ostomy Patient Guide (80 pages) – Published by the United Ostomy Associations of America, Inc. (UOAA). It contains ads, unfortunately, but the information in between them is very comprehensive, and helpful to all types of ostomates. 

Glossary 

Ostomy terms and definitions A-F (2 pages) 

Ostomy terms and definitions G-Z (2 pages) 

– Definitions of ostomy terms assembled by the Executive Editor of the JWCET  (Journal of the Word Council of Eterostomal Therapists). 

Hernias 

Diagnosis and Management of Parastomal Hernias (5 pages) – This is an article from a medical journal, published in 2019. It’s most easily read by and intended for medical professionals obviously, but if you want a better understanding of the different surgical techniques used to repair hernias, you’ll find it here, along with some helpful illustrations. 

Parastomal Hernia: Incidence, prevention and treatment strategies(4 pages) – This is the full text of an excellent article that appeared in the British Journal of Nursing in 2008, written by a Stoma/Coloproctology Nurse Specialist. 

Parastomal Hernias (12 pages) – Another great guide produced by Colostomy UK. This one’s about the causes, symptoms, prevention, and treatment of parastomal hernias. 

Preventing Peristomal Hernia (4 pages) – A very helpful guide published by the University of Michigan Health System, containing prevention tips for both pre- and post-surgery. 

Ileostomies 

A Guide to Living with an Ileostomy (17 pages) – A very helpful publication from The  Canadian Association for Enterostomal Therapy (CAET), including pre-op preparation and post-op expectations. 

Diet Guidelines for People with an Ileostomy (14 pages) – This is a well organized and easy to follow guide, with tips for eating and drinking with an ileostomy, both immediately post-surgery and long term. It’s pretty much identical to its guidelines for people with a colostomy, but has additional sections on preventing dehydration and preventing ileostomy blockage. The booklet is published by Memorial Sloan Kettering Cancer Center in NYC. 

Having an Ileostomy: A Primer for New Ostomates(21 pages)Published by The Cleveland Clinic Foundation for ileostomy patients. It’s several years old, but the information is solid, it covers a broad range of topics, it’s clearly written, and really well illustrated. They did a great job on this! 

High Ostomy Output (4 pages) – This is a small guide put together by UW Health of the University of Wisconsin-Madison. It’s got some good information about medications to help slow down output, and recipes for drinks to replace fluids and electrolytes. The last page is a handy chart you can use to monitor your intake and output. 

High Output Ileostomies: The Stakes are Higher than the Output (11 pages) – Intended for clinicians, this detailed look at management of high output ileostomies would be of equal interest to individuals who want to avoid dehydration and/or kidney injury. It’s part of a series of Nutrition Issues in Gastroenterology published in the University of Virginia’s Practical Gastroenterology Journal. 

How to Treat Ileostomy Blockage (2 pages) – This is a small but critical resource for anyone who may be suffering from an ileostomy blockage. One page details how to manage it at home, and when to seek medical help. The second page should be printed out and taken with you – to inform emergency room staff (who may not be specially trained to deal with ostomies) what procedures they should follow. This is another great publication of the UOAA. 

Ileostomy: A practical guide to stoma care (34 pages) – a very readable and comprehensive booklet published by CliniMed, a UK-based company that markets and distributes a range of medical products, specializing in stoma care, urology, and wound care. 

Ileostomy Guide(31 pages) – United Ostomy Associations of America (UOAA) has produced this excellent guide about managing and living with an ileostomy. 

Ileostomy surgery and your care (38 pages) – A good overall guide published by St. Joseph’s Heathcare Hamilton, in Canada. Everyone facing or recovering from ileostomy surgery should be given a guide like this, 

Leaving Hospital Following Ileostomy Surgery (28 pages) – Mississauga Halton LHIN (Local Health Integration Network) of Ontario, Canada has produced this very helpful information booklet. It’s well illustrated and includes advice on taking care of your ileostomy, changing pouches, etc., as well as good information on financial assistance and resources available in Ontario and/or Canada. 

Images/illustrations 

A Practical Guide for Peristomal Skin Problems (15 pages) – A guide developed by the Ostomy Forum, an international group of ET nurses, and published by Dansac. It’s intended to help nurses and clinicians assess and manage skin problems associated with stomas. It contains photos of the many different types of problems, which could help ostomates identify and describe their symptoms. 

A Practical Guide for Stoma Problems (15 pages) – As above, this guide from the Ostomy Forum/Dansac is intended to help nurses and clinicians assess and manage stoma problems. It contains helpful photos of the many different types of stomas and stoma problems. 

Common Skin and Stoma Problems (23 pages) – more very clear and helpful photos of stoma and peristomal skin problems. This collection was part of a presentation by a clinical nurse specialist in Ireland. 

Irrigation 

Colostomy Irrigation(4 pages)A personal account about using irrigation, written by the VP of United Ostomy Association Canada. It provides the kind of extremely helpful details that only someone who’s been doing this for years can provide. 

Colostomy Irrigation: An introduction (12 pages) – Published by Colostomy UK, this booklet will answer all your questions – who? why? how? when? – about irrigating. 

The FAQs according to Steven (13 pages) – A nice collection of irrigation tips and explanations compiled by contributors to the UOAA discussion board. 

J-Pouch 

Ileoanal Reservoir Guide (29 pages) – published by the United Ostomy Associations of America (UOAA). This is an up-to-date (revised in 2018) and very comprehensive guide to J-Pouches. It covers how it works, why it may (and may not) be an option, and what the alternatives are. 

Patient & Family Guide to Ileal J-Pouch Anal Anastomosis (IPAA) Surgery (23 pages) – This guide, written by the Colon & Rectal Surgery Division of the University of Pennsylvania Health System, is specifically designed for people who will be having a J-Pouch. But because most of it is about living with and caring for a temporary ileostomy created before the J-Pouch, it’s really more of an intro guide to ileostomies. It’s done in note form, with lots of good photos, so it’s easy to read and understand. 

Medications 

Ostomies and Medications (46 pages) – This is a thorough and important look at issues around medications, including nutritional supplements and vitamins, in people with ostomies. It was written by a Clinical Nutrition Support Pharmacist at the University of Miami Hospital. 

Medications and Their Effect on Your Ostomy (6 pages) – In this article for the St. Louis Association of the UOAA, Registered Pharmacist Stephen L. Naeger discusses everything from antacids and birth control pills to urinary acidifiers and vitamins – with a particular focus on absorption issues. 

Nursing/clinical guidelines & best practices 

Practice Implications for Peristomal Skin Assessment and Care (10 pages) – from the 2014 World Council of Enterostomal Therapists International Ostomy Guideline. This helpful illustrated guide covers everything you ever wanted to know about ostomy-related skin problems but were afraid to ask. 

Stoma Complications: Best Practice for Clinicians(25 pages) – Intended for medical clinicians, this publication by the Wound Ostomy and Continence Nurses Society in the US offers good descriptions of the identification, prevention, and management of parastomal hernias, laceration of the stoma, mucocutaneous separation, necrosis, prolapse, retraction, and stenosis. Warning: contains some pretty graphic photos near the end. 

Supporting Adults Who Anticipate or Live with an Ostomy (140 pages) – A ‘Best Practice Guideline’ from the RNAO (Registered Nurses’ Association of Ontario). This is intended for nurses, so it’s a very thorough look at all aspects caring for an ostomy. I particularly love the many photos of stomas – healthy ones and those with problems – making it much easier to identify potential problems than simply reading about them. 

Understanding stoma complications (5 pages) – Intended for wound care specialists, this journal article in a 2013 issue of  Would Care Advisor explains “how to identify and manage stoma hernias, trauma, mucocutaneous separation, necrosis, prolapse, retraction, and stenosis.” 

Nutrition 

Diet Guidelines for People with a Colostomy (10 pages) – This is a well organized and easy to follow guide, with tips for eating and drinking with a colostomy, both immediately post-surgery and long term. It’s published by Memorial Sloan Kettering Cancer Center in NYC. 

Diet and nutrition when you have an ileostomy (4 pages) – A complement to their guide to ileostomy surgery, St. Joseph’s Heathcare Hamilton has published this handy summary of a healthy diet for ileostomates. 

Eating Well after Ileostomy Surgery(4 pages) – A nice summary of what to eat (and not eat) after ostomy surgery, prepared by the Alberta Health Services. 

Eating with an Ostomy; A Comprehensive Nutrition Guide for Those Living with an Ostomy (76 pages) – Everything you need to know, from dietary guidelines to how medications are absorbed in different kinds of ostomies. Published by the United Ostomy Associations of America (UOAA). 

Healthy Eating: Nutritional guidelines for people who have a stoma (12 pages) – another good resource of Colostomy UK. 

Nutritional advice after bowel surgery (12 pages) – a very readable and comprehensive booklet published by CliniMed, a UK-based company that markets and distributes a range of medical products, specializing in stoma care, urology, and wound care. 

Nutrition after Ileostomy(16 pages) – guidelines for staying healthy after ileostomy surgery, published by Vancouver Coastal Health. Includes a sample menu, a section on medications, and lots of other good tips. 

Nutritional Management of High Ostomy Outputs (3 pages) – A small but informative guide published by Niagara Health, a healthcare provider in Ontario, Canada. It explains how to modify your diet to better manage high output. 

Prolapsed stoma 

How do I Manage a Prolapsed Stoma?  (3 pages) – A brief article published by Michigan Medicine, University of Michigan. Good general information and a couple of graphic but informative photos of prolapsed stomas. 

Patient Advice Leaflet for Managing a Prolapsed Stoma (2 pages) – Another brief but informative article. This one’s published by the UK’s Norfolk and Norwich University Hospitals. 

Reversals 

Reversal of your Ileostomy or Colostomy Stoma(9 pages) – Another good guide published by Vancouver Coastal Health. Great tips on what to expect after reversal surgery and guidelines on gradually increasing your activity. 

Stoma Reversal(16 pages) – A good information booklet published by Colostomy UK about what to expect before and after stoma reversal surgery. Part I is a surgeon’s perspective and Part II is a nurse’s – so it covers both the medical and practical angles. 

Understanding Stoma Reversal (28 pages) – Published by the Irish Stoma and Colorectal Nurses Association, this is a thorough overview of why and when stoma reversals are considered, and offers important pre- and post-op advice. 

Short Bowel Syndrome 

Short Bowel Syndrome and Crohn’s Disease (28 pages) – A really comprehensive look at the diagnosis and treatment/management of SBS. It even discusses the impact of SBS on children and pregnant women. It’s published by the Crohn’s & Colitis Foundation. 

What to eat when you have Short Bowel Syndrome(8 pages) – This is published by Hamilton Health Sciences in Ontario, Canada. In addition to explaining the symptoms of SBS and dietary recommendations to manage it, I love that it includes a sample daily meal plan. 

Skin problems 

Basic Ostomy Skin Care: A Guide for Patients and Health Care Providers (13 pages)Published by the Wound Ostomy and Continence Nurses Society (WOCN), this is a “best practices” skin care guide for nurses and patients. It’s not what you need if you’re dealing with existing skin problems, but is chock full of information and tips on how to prevent them. 

Granulomas (1 pg) – This is a short but really informative guide, entitled “Julie Rust answers your questions about Granulomas” that appeared in the Winter 2017 issue of Tidings, a magazine produced by Colostomy UK. 

Keeping Skin Healthy, Preventing and Treating Complications (4 pages) – Published by Coloplast. This short, simple, but comprehensive guide to maintaining the health of stomas and peristomal skin should be provided to every patient after ostomy surgery. 

Peristomal Skin Assessment Guide  (Not a pdf file, but an online guide) – This is a fabulous interactive guide produced by the Wound, Ostomy and Continence Nurses Society (WOCN) in the US. It talks you through figuring out what’s going on with your skin and what to do about it. The detailed questions and very helpful pictures of affected skin will help you describe your symptoms and identify the problem. 

Skin problems associated with ileostomies and ileo-anal pouches (6 pages) – A very helpful booklet about skin disorders that may be encountered by ileostomates, including those with an ileo-anal reservoir (J-pouch). It’s published by the Ileostomy & Internal Pouch Association in the UK. 

Surgery 

About Your Abdominal Perineal Resection (APR) Surgery  (72 pages) – This is an amazing guide for patients at Memorial Sloan Kettering Cancer Center in NYC who will be having APR surgery. It provides detailed and very helpful tips for pre- and post-surgery. 

About Your Low Anterior Resection (LAR) Surgery (55 pages) – Another great guide from Memorial Sloan Kettering Cancer Center. This one’s for patients who’ll be having LAR surgery. Again, it provides detailed and very helpful tips for pre- and post-surgery. 

Ileal Pouch Owner’s Manual (9 pages) – A guide for patients published by the Dept. of Surgery, University of Wisconsin School of Medicine & Public Health, explaining everything you need to know about Ileal Pouch Reconstruction (AKA J-Pouch and S-Pouch). 

Pain and Discomfort following Stoma Surgery(12 pages) – Published by the Colostomy Association in the UK. A good overview of coping strategies and medical treatments for different types of pain following stoma surgery. It covers surgeries where the rectum is left intact and those where the rectum is removed. 

Rectal Discharge following Stoma Surgery (12 pages) – another informative guide for post-surgical ostomates, this booklet from Colostomy UK explains the reasons for and management of  rectal discharge. 

Surgical Options for Bowel Diversion (2 pages) – a short but informative guide from the United Ostomy Associations of America (UOAA). It explains the procedures as well as the pros and cons of common bowel diversion surgeries. 

Urostomies 

A Guide to Living with a Urostomy (15 pages) – A very helpful publication from The  Canadian Association for Enterostomal Therapy (CAET), including pre-op preparation and post-op expectations. 

Leaving Hospital Following Urostomy Surgery (24 pages) – Mississauga Halton LHIN (Local Health Integration Network) of Ontario, Canada has produced this very helpful information booklet. It’s well illustrated and includes advice on taking care of your urostomy, changing pouches, etc., as well as good information on financial assistance and resources available in Ontario and/or Canada. 

Surgical Options for Bladder Diversion (2 pages) – a nice little booklet published by United Ostomy Associations of America (UOAA), comparing 3 bladder diversion options – ileal/colon conduit, continent urinary reservoir, and neobladder. 

Urostomy: A practical guide to stoma care (12 pages) – a very readable and comprehensive booklet published by CliniMed, a UK-based company that markets and distributes a range of medical products, specializing in stoma care, urology, and wound care. 

Urostomy Guide (25 pages) – The UOAA has also produced this comprehensive guide about managing and living with a urostomy. 

Urostomy Guide (19 pages) – This booklet provides a really good overview of urostomies – different types of urostomies and pouching systems, and how to care for them. It’s published by the American Cancer Society.