30 Jul Crohn’s and Colitis Support Groups
IBD Support Groups
When putting together a plan to manage your inflammatory bowel disease (IBD), it is important to leverage support groups both online and offline. Remember, you are not in this fight alone. To help, we have created this article that provides a list of online support groups (with links) available to those affected by Crohn’s disease or ulcerative colitis. We also cover the use of your “offline” support network of friends and family.
Online IBD Support Groups and Forums
Online support groups and forums are a great way to connect with others affected by IBD. These resources provide valuable info about diets, treatments, and experiences shared by the IBD community. Listening and interacting with an online group can also be a great option when the subject matter seems too uncomfortable to share with friends and family. Scroll down to see online IBD support groups that are free to join, some even allow access without an account.
Crohn's and Colitis Foundation
The Crohn’s & Colitis Foundation has a great website with a huge amount of helpful information. The Community Forum is a dedicated space for those struggling with an IBD diagnosis. Here you will find everything from general information to emotional support from a large network of IBD patients. The forums are also categorized to help refine your reading. This IBD support group is free and available for viewing even without an account.
Reddit Support Groups
Reddit has a very active community on both the r/CrohnsDisease and r/UlcerativeColitis subreddit pages. Because of this, the benefits of using reddit include a high level of engagement and no shortage of recent posts.
Remember, like many online forums, reddit is free and easy to join anonymously. The drawback of this is that it can incentivize some to spread hate or misinformation. Try to take what you read with a grain of salt.
Access to these IBD support groups are free and you may also browse the posts without an account.
Facebook Support Groups
There are both Crohn’s and ulcerative colitis support groups available on facebook. These groups are private and content is moderated so that the discussion remains relevant and useful to those affected by IBD.
These groups use a Facebook profile, which you likely already have, to interact with the community. Posts made on the group page are only viewable by those who are also a member of the group. While access to these groups are still free, the slightly restricted usage may result in a more effective community.
Discouragement
Although reading and relating to others’ experience with can be helpful, it’s also easy to be discouraged by reading too much about bad experiences. Remember to take a break from the Crohn’s and ulcerative colitis forums frequently, too much reading can get unhealthy. We also encourage those affected by IBD to register and share their own experience in addition to reading about other people.
Offline Support Network
It is important to allow those close to you to provide support. Friends and family are often able to listen and empathize. However, advice from friends and family can occasionally become frustrating. It may feel like those who aren’t struggling with an IBD don’t understand. Remember that it is perfectly fine to set boundaries within your support network.
If advice from friends and family becomes too frustrating, let them know politely that you only wish to hear specific advice from your medical team. Be up front with friends and family if you are seeking a safe space to vent, and do not wish to take any direct advice. Still, speaking and interacting with real people who care about you is invaluable. Be sure to leverage both online and offline community support to set yourself up with the best possible support network.
Inflammatory Bowel Disease Treatment
In addition to a community support network, management of IBD normally includes the use of biologic medications. Thankfully, these treatments are available to help improve the quality of life for those affected by Crohn’s and ulcerative colitis. Advances in technology in recent years have led to the development of several very effective therapies.
The most common biologic infusion treatments for IBD are Remicade (infliximab), Entyvio (Vedolizumab), and Stelara (Ustekinumab). Remicade is also offered in several biosimilars that could lower the cost of treatment.
These infusions have been shown to improve symptoms and overall management of IBD. However, they may not be appropriate for everyone. Your healthcare provider can help determine the best treatment plan for your unique treatment needs.
Where can I get my infusion?
Typically, biologics are administered via infusion or injection in a hospital or provider’s office. Nevertheless, recent findings suggest that receiving treatment at a stand-alone or ambulatory infusion center (AIC) can lower infusion costs by up to 53%, while providing a more individualized and private experience.
Here at Pure Infusion Suites, we put our patients first. We offer flexible scheduling, co-pay assistance, and other financial aid programs, as well as private suites equipped with recliners, flatscreen TVs, and snacks and drinks for you and your loved ones to enjoy.
Pure Infusion Suites currently has locations in Arizona, California, Colorado, Florida, Georgia, Idaho, Montana, Nevada, New Mexico, Oregon, Utah, and Washington. Our founders created Pure Infusion Suites to make the infusion process comfortable, streamlined, and affordable.
Our expertly trained staff will be with you throughout the infusion process to ensure easy referrals and insurance authorizations and reduce the cost of your infusion where we can.
At Pure Infusion Suites, there’s no waiting. You will immediately go into your private suite to enjoy your favorite shows, snacks, and meals during your infusion appointment.
If you have been prescribed an injection or infusion add-on therapy for your ulcerative colitis and are looking for a patient-focused experience, click here to find a clinic near you, or call us at 855.550.3358.
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