Resources and Links
“What’s your favorite toilet paper?” asks someone on j-pouch.org. “Soon to be an ex-pouch lady” pronounces a caption on a picture posted on jpouch.net. Thanks to the internet, more patients have been able to connect and form support groups around the J-pouch. Sometimes, just knowing that you’re not alone can be enough encouragement. We’ve listed below some common blogs, forums, and other helpful websites related to the surgery and its procedures. We hope you find these websites helpful!
Please note that medical concerns should be addressed by your healthcare professional. We do not guarantee any information listed on the sites to be medically accurate nor do we suggest you use forums for medical purposes.
Finally, please share your recommendations! If you are aware of other resources we should include, send an email to IPAA@bmc.org.
The The United Colon Vlog (http://www.ucvlog.com/) contains video and written diaries of two young patients who underwent the IPAA procedure for treatment of their inflammatory bowel diseases. Nadia and Dennis share their personal accounts of living with IBD, the stages of their surgeries (including ostomy tips), and how having an IPAA has affected their lives. The United Colon Vlog provides an insider’s perspective for patients contemplating IPAA surgery.
The J-Pouch Community (http://www.j-pouch.org/) is a web community founded by William Johnson, a patient who underwent the IPAA procedure. This community is entirely dedicated to providing information and support regarding the ileal pouch-anal anastomosis. Information found on this site includes a step-by-step explanation of the j-pouch procedure, an overview of the digestive system, easy to follow dietary advice, and Q&A on issues that arise both before and after the procedure.
The American Cancer Society's Ileostomy Guide (http://www.cancer.org/) is aimed at helping patients gain a better understanding of the difference between IPAA and ileostomies, how they affects the normal digestive system, and the changes they bring to daily life. In addition, this site features helpful advice on ileostomy management including stoma care, pouch systems, and solutions to common ostomy problems, as well as tips for returning to normal activities.
The Gay & Lesbian Ostomates (http://www.glo-uoaa.org/index.html) website addresses the unique needs of gay ostomates. The site also features a helpful resources page (http://www.glo-uoaa.org/resources.htm) for gay and straight ostomates alike, including information about sexual relations after surgery.
The Ostomy Association of Boston (http://www.bostonoab.org/) is a resource for patients who have, or will have, an ostomy. With support meetings throughout the greater Boston area, patients can come together to learn, exchange ideas, and offer emotional support. Patients, family, friends, and caregivers can become members of the OAB for a small fee. The OAB’s Ostomy Resource Guide explains the different ostomy procedures and care options.
The United Ostomy Associations of America (http://www.uoaa.org/) is an association of affiliated support groups committed to improving of the quality of life of people with ostomies and other intestinal and urinary diversions. The UOAA website contains helpful information on how to care for an ostomy and provides listings of area support groups. The site also features an active, thriving discussion board. The UOAA’s guidebook explains each step of the IPAA procedure in detail and contains helpful post-operative advice.
The Young Ostomate & Diversion Alliance of America (http://www.yodaa.org) provides both community and resources to young adults, ages 18 to 35, with ostomies, diversions, or are preparing for a similar surgery. Here you will find information about national events, local events, helpful resources, and ways to stay connected in this community. Affiliated with the UOAA (see above), YODAA is dedicated to providing education, information, support and advocacy as it addresses the concerns of young adults who have or may have intestinal or urinary diversions or alterations.
Traveling with an ostomy and afraid of getting a bit-too-thorough pat-down? Patients with medical conditions (such as an ostomy) can present a card to TSA officers, which discreetly notifies the screeners in advance to expect things like ostomy bags continuing urine or stool. The TSA has a template for such a card on their website (http://quest.mda.org/sites/default/files/Notification%20Cards%20II.pdf). Please note: this card does not excuse you from the screening – it just alerts the TSA officer to expect something a bit unusual.
Health Central's Ulcerative Colitis Basics (http://www.healthcentral.com/ibd/ulcerative-colitis-basics.html) site presents information on the basics of ulcerative colitis including symptoms, diagnosis, management, and treatment. An explanation of the IPAA procedure, as well as a description of the common complications, can also be found here.
On About.com’s inflammatory bowel disease (http://ibdcrohns.about.com/) site Amber Tresca (who has a j-pouch) guides readers with ulcerative colitis, Crohn’s disease and j-pouches. Topics change weekly and include articles such as: “New IBD Diagnosis? Start Here,” “Time for a Road Trip? How to Travel by Car” and “How to tell a good IBD website from a bad one.” You can also sign up for a newsletter delivered to your email every Monday (http://ibdcrohns.about.com/gi/pages/stay.htm).
The Crohn's Colitis Foundation of America (CCFA) (http://www.ccfa.org/) is an organization dedicated to finding the cure for Crohn's disease and ulcerative colitis, and to improving the quality of life for individuals affected by these diseases. The CCFA website features information describing ulcerative colitis, its treatments – including the surgical IPAA procedure, and its possible complications. The site also provides information on support services and tips for living a fulfilling life. The CCFA website also provides a brief summary of the surgical treatments for ulcerative colitis, including IPAA, and some of the common complications.