Today's post has been a year in the making. I intended to post this last January when I first started my blog, but I held off for some reason and I'm glad I did. I've spent the past year fine-tuning this list and am excited to share with you some really helpful resources. When my daughter was first diagnosed with IBD, specifically Ulcerative Colitis, I had many, many questions and far too few answers. I spent hours glued to my computer, scouring the web for anything I could find that would shed light on how she had gotten sick and what was to come. Much to my dismay, most of the information I found was either redundant or irrelevant. I could find very little that was specific to children and absolutely nothing about how to help a six-year-old (and a 40-year-old!) come to terms with what was happening to her body.
After weeks of relentless searching, I found a nice collection of trustworthy sites with useful information and over the past year and half, have continued to evolve that list. Today I'm sharing my current list of favorites in the hopes of saving you some of the frustration I experienced. I want you to spend less time digging and more time learning how to help your child, yourself or someone else you love. My critera for making this list was that the site had to offer solid information to patients (as opposed to medical professionals) and have a heavy slant towards pediatric care. Each site also had to offer unique information not published on every generic IBD site out there. This list is by no means exhaustive, but it’s a great place to start.
BEST GENERAL IBD RESOURCES:
This is the mother ship of IBD research and support. There is a section for people who have been newly diagnosed, current research information and numerous ways to get involved in the IBD community. Local CCFA chapters are also linked to this page, so you can find resources in your own community. And if that weren’t enough, this is the home base for several great programs that are particularly helpful for people who have children with IBD:
- Camp Oasis: Nationwide summer camp opportunities for kids with IBD...a great place to connect with other kids who understand what it's like to live with a chronic disease.
- Power-of-Two: This link is for the CCFA NW chapter, but be sure to look for this program on your local CCFA chapter website. Power-of-Two provides short-term mentoring support to patients and their families coping with IBD. Individuals participating in the program are matched to volunteers who have had similar challenges and experiences for phone or e-mail conversations. I signed up for this when my daughter was diagnosed and found it to be very helpful. Since then, I've become a volunteer for this program. You can read more about my experiences here.
Download this sweet little app to your phone, so you can always find a loo when you need one. There are actually lots of apps like this, but I found this one to be most helpful.
This is an article about the Restroom Access Act which, at the time of publication, has been passed in 14 states and requires retail establishments with public employee restrooms to allow access to customers who suffer from IBD. Check it out and see if your state is covered. Delaware just recently joined the list. For the most recent information, check with your state's Department of Health. If your state is not covered by the law, consider advocating for legislation in your area.
WA residents can download passes here: WA Restroom Access Pass
OR residents can download passes here: OR Restroom Access Pass
BEST PEDIATRIC IBD RESOURCES:
Pediatric IBD Foundation (Sponsor: Pediatric IBD Consortium)
If the CCFA is the mother ship for all things IBD, this website is the mother ship for Pediatric IBD. There are areas of interest for parents and teens. Especially helpful are the resources in the parent section about school and travel, as well as a nice list of fact sheets in the multi-media resource library. I don't know how often this website is updated, but it is a great source if you are just starting to learn about pediatric IBD.
This is the clinic we go to, so I feel very comfortable with this hospital. I also feel they have one of the best pediatric IBD websites. They have some great resources online including brochures, videos and learning activities to help children understand IBD. Most of the larger children’s hospitals have their own GI clinic information, so be sure to check out your local hospital's resources as well.
Kidshealth (Sponsor: Nemours Foundation)
This website is a popular resource for all things kid-health related, with areas for parents, kids and teens. There is a lot of basic health information along with IBD specific articles. The kid areas also have great information about how the body works, which can be helpful in explaining what is happening with the body parts that are sick.
IBD U (Sponsors: Starlight Children's Foundation and Children's Digestive Health and Nutrition Foundation)
This is a site for teens transitioning to college. Obviously, with a young child, I’m not really in need of this information yet, but I believe knowledge is power and being prepared is half the battle. If I can keep a few steps ahead of where we are now, I feel more in control. And although I don’t spend a lot of time reading this site, I like knowing it’s there.
This is a blog written by a brutally honest, Sara Ringer, who has been through just about every miserable aspect of IBD that a person can go through. She is a passionate advocate and tells it *exactly* like it is. There is no sugar coating on this blog, and although it is upsetting at times, it is nice to have an honest look at what this disease can do. I also find Sara to be incredibly inspiring and really appreciate the time she takes to advocate for this disease, including as a counselor at Camp Oasis.
This is hybrid blog/forum written by a guy named Adam, who has UC and started his site back in 2010. He has created an impressive and supportive community here with many shared reader stories, surveys, videos, resources and more. Some of the stories are sad and quite scary, but there is also a celebration of success going on...definitely worth a visit.
This site may not be for everyone, but I like that it takes a different approach to activism. They claim to be “Making Crohn’s and Colitis Cool” which, honestly, is a stretch. But I appreciate the use of dark humor to help people make it through the tough stuff. Sometimes you do just have to be able to laugh at things even at the worst of times. And for people who are not familiar with these diseases, a lighter approach can help take away some of the “ick-factor” of IBD.
Written by 21 year-old Sarah Brocker, who was diagnosed with Crohn's when she was in 6th grade. The blog talks about the realities of life with Crohn's, but Sarah is a fighter! She is nothing but positive and will show you how she makes the best of a bad situation.
This is a blog written by a mom whose daughter was diagnosed with UC at a very young age. It hasn't been updated in a while, but has good info, nonetheless. I felt that it was very relatable.
So, that's my list. I hope it helps you find the answers to some of your questions. If you know of some great online resources that I have missed, please feel free to leave comments and links in the comment section below. I will constantly be updating and am always eager to learn more.
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Thanks for stopping by and joining me in Fighting Flare. XOXO, Cindi
Photo Source: Flickr