Resources and Links

As a new ostomate, it is important to have access to reputable resources. It is also important that we pass what we learn on to others. While this is not an inclusive list, below are resources that I have found helpful. If you have more resources to share or a site and/or organization of your own you would like shared here, please email us at: ostomyinnovations222.customerservice@gmail.com so we can add them. Sharing is caring!

• The United Ostomy Association (UOAA), contains a ton of information for ostomates. Not only does it contain valuable knowledge, but it has information on self-advocacy tools such as The Ostomy and Continent Diversion Patient Bill of Rights and a Restroom Communication Card. Here are the links:

• UOAA website: ostomy.org
• UOAA link to advocacy tools: advocacy@ostomy.org UOAA link to the Patient Bill of Rights: ostomy.org/bill-of-rights/
• UOAA link to the Restroom Communication Card: ostomy.org/restroom-access-self-advocacy-tools/ 

• https://www.crohnscolitisfoundation.org This organization is a non-profit, volunteer run organization dedicated to finding cures for Crohn's disease and ulcerative colitis, and improving the quality of life of children and adults affected by these diseases. 

• The Great Bowel Movement is an active community of IBD patients and their caregivers. You can find stories here or share your own. Check out this site at:  thegreatbowelmovement.org

• This website is another great tool for patient and caregivers regarding care and treatment advocacy information. This site isn’t IBD specific, but it is focused on chronic conditions. Check out Patient’s Rising here: patientsrising.org

• Join a community of patients who have unanswered questions they haven’t been able to solve during their medical journey. This site is aimed at bridging the gap between people with chronic conditions and the medical community. https://www.healp.co

• Girls With Guts is a national support network that assists women with Crohn’s Disease and Ulcerative Colitis with or without a stoma in their search for community, acceptance and empowerment. You can find this organization here: girlswithguts.org

• What is sexuality? The Sexuality Education Resource Centre has that answer here: https://serc.mb.ca/sexual-health-info/sexuality/sexuality-wheel/

• Below is a survey from the FSFI that measures the sexual functioning of women in six different domains: desire, arousal, lubrication, orgasm, satisfaction and pain. Although the website emphasizes spine and urinary issues, this survey can be helpful for women who suffer from any chronic condition where intimacy is affected. Please see their website for their clinical and research summary for this survey.

• Survey here: https://scireproject.com/outcome/female-sexual-function-indexfsfi/#:~:text=The%20FSFI%20is%20a%20survey,%2C%20orgasm%2C%20satisfaction%20and%20pain.

• To find a therapist or sexual health counselor in your area please go here: https://www.aasect.org/referral-directory

• Maslow’s Hierarchy of Needs (google for information) is a model for understanding the motivations for human behavior. It maps different motivations onto a pyramid, with each level representing a different human need. These include physiological needs, safety, love and belonging, esteem, and self-actualization.

• Getmegiddy.com is a site dedicated to helping its readers with sexual health conditions, diseases and disorders, and they even provide answers to questions about bodies, stages of life, and relationships; they also help you adopt lifestyle changes and gain perspective on living with lifelong medical conditions which affect the most intimate parts of life. This site provides expert-reviewed articles featuring a range of topics from prostate health and breast cancer, to orgasms and relationships. If you are interested in learning more about this site please go here: https://getmegiddy.com

• The book “Come as you are” by Emily Nagoski, PHD. I have not read it, but it did come highly recommended to me.