INFORMATION: Little Vitamins for your Brain

As I have stated in previous posts, the most useful source of information about my Crohn's disease, besides my doctors, has been the Internet. Yes, the Internet, in all its spam-filled, keyboard-warrior, opinionated, misguided glory. While the 'Net is rife with misinformation about any-and-every topic known to man (and even some topics that aren't known to man), there are still some dark, quiet corners of the web that harbor endless seas of useful, truthful, and supportive information. And as you will learn, some of these little hidden gems are making a huge impact on the awareness and forward-process of treating and curing Crohn's and Ulcerative Colitis. I'd like to share some of my personal favorites.

THE BASICS: These sites are generally thought of as the leaders in information about CD/UC:

• CCFA.org - The Crohn's and Colitis Foundation of America (based in USA)
• CrohnsAndColitis.org.uk - Crohn's and Colitis UK (based in United Kingdom)
• CrohnsAndColitis.com.au - Crohn's and Colitis AU (based in Australia)
• IFFGD.org - International Foundation for Functional Gastrointestinal Disorders (worldwide) 
• Mayo Clinic Crohn's Disease (based in USA, useful worldwide)

LIVING WITH CD/UC: Useful, applicable, real-life tips, tricks, and stories:

• Crohn's & Me - excellent starting point for newly-diagnosed; you can also sign up for the free Crohn's Advocate e-magazine.
• CrohnsAndColitisInfo.com - another great starting point for newly-diagnosed or caregivers
• About.com - tons and tons of information! Links, videos, articles, studies... you name it! 

COMMUNITIES: Find other Crohn's and Colitis patients, share experiences, tips, and stories:

• Facebook Group: Crohn's and Ulcerative Colitis Support Group - You must be approved by the group's owner to join this group; it's a private group, so anything posted here will NOT show up on random friends' Facebook news feeds. I am part of the admin team, and I am very proud to say this is my daily go-to source for information and support. You will likely make new friends and learn about aspects of Crohn's and Colitis you've never heard of. (With all community groups, abide by the house rules at all times to avoid potential conflict!)
• Reddit Crohn's Disease - beware, Reddit is not for everyone. As with any website that is run by its members, you may find some posts or items disturbing. However, there are far more useful and helpful (and sometimes even funny!) posts here.
• Crohn's Zone - community forum. Similar to any forum-based support group, you sign up to participate in discussions with other members. I happen to really like this one because they offer useful articles as well as member posts, and even have a Schwag Store.

PARTICIPATION: Take part in clinical studies, fundraiser events, and research opportunities:

• ClinicalTrials.gov - registry and results datatabase of publicly and privately supported clinical studies of human participants conducted around the world. Search for your condition or location from the main page.
• World Health Organization (WHO) Clinical Trials Registry - similar to the one above; worldwide.
• Chronology - A really unique website which gathers and reports user-based data about chronic health conditions. The more information you give them about your personal condition, the more useful the research can be.
• 23andme DNA IBD Study - as of the date that I'm posting this blog, this study is still accepting new participants. The kit and ancestry info is FREE for participants: you must be diagnosed with a form of IBD, and you must consent to have your DNA information recorded and researched. Even if you don't have IBD, you can still purchase a DNA testing kit and have your ancestral results sent to you. Your DNA may also help guide future genetic studies for countless medical conditions!
• GYGIG - Get Your Guts in Gear: A non-profit fundraiser for IBD awareness and research through multi-day bicycling events around the U.S. 

SPECIALTY SITES: 

• Friends of Ostomates - for IBD'ers with accessories such as colostomy or ileostomy bags.
• IBD U - for children and teens with IBD
• Traveler's Assistance - a worldwide resource of assistance for traveling with medical conditions
• Toilet Finders! - For Australia or New York City, interactive maps to locating public restrooms. There may be other sites out there for various locations - use Google to search for a site.
• Food & Cooking - There are MANY sites out there devoted to the dietary restrictions of Crohn's and Colitis. Some of my favorites are The Colitis Cookbook, Coping Well with Home Enteral Nutrition, and the Specific Carbohydrate Diet (SCD).  
• Caregiver's Network - Sometimes, those who help us need a little help too.

MOBILE APPS: there are lots out there, these are just the ones I am using:

• PoopLog (Android) - Track your bowel movements using the Bristol Stool Scale. Includes options to attach photos and notes to give to your health practitioner.
• GI Monitor (all platforms) - Log and analyze symptoms, medications, meals, and pain levels.
• AnyTimer Pill Reminder (Android) - set completely customized reminders for your phone to remind you to take meds at any time of the day/week/month, for however long you need to. As a bonus, you earn AchieveMints for using it. 
• GI Buddy by CCFA (Android & iTunes) - similar to GI Monitor, with various logging and interactive uses.

My list of links above is nowhere near exhaustive or complete. These are just some of my favorites that I wanted to share with you. A great source for even more links with a wide range of topics can be found here: HELPFUL LINKS. There are links on that page to direct you to assistance programs, insurance information, medical journals, and much, much more. 

The Internet has become the world's most loved and hated engine for sharing information. Unfortunately, just as in real-life, there are wrong turns you can take online that can lead you to spam, misinformation, or false data. Use the 'Net at your own risk, and be cautious of any information you gather. Always, ALWAYS ask your doctor or other health professional if you are ever unsure!

I hope these links will help you as they have helped me. What are your favorite websites or apps for your Crohn's and Colitis support? Please share in the comments!

Comic Relief

I think it's pretty safe to say that anyone who battles with a chronic illness will agree that laughter is great medicine. That being said, there's not much about Crohn's or UC that is "funny" or "fun," but it certainly can provide us with some awkwardly hilarious situations.

It takes a brave person to not only share their story, but also to find the humor in it. Situations like this usually aren't funny at the time they happen - more embarrassing and humiliating. But if you can look back on an incident and laugh about it, you're doing something right!

It is here that I will share one of my own awkward, funny stories.

About a decade ago, I was shopping with my significant other at a local big-box store. I had felt fine the whole day, and we had just left a pizza parlor where we had dinner. This store had a counter with cash registers in the middle of the health and beauty section, which was where I was browsing. Suddenly, out of nowhere, I experienced a sharp pain in my stomach, right behind my belly-button. It came on so fast, I momentarily thought I was being stabbed! I crouched down in the aisle, cradling my stomach with my arms, hoping and waiting for this pain to pass.

Just as the sharp pain began to subside, I felt a strange tingling in my jaw, and my mouth began to water excessively. Something in my brain told me what was about to happen - I was going to vomit RIGHT NOW.

The restrooms were clear on the other side of the big-box store, and I knew there was no way I could make it to them without losing it along the way. I frantically searched around the aisles for a rogue trash can, to no avail. By this point, sweat was dripping down my face, and my significant other was keeping his distance - probably fearing I was turning in to a werewolf.  I rounded a corner and spied the counter with the cash register, with a very young man standing behind it. In the only voice I could muster up, I said, "I need a trash can!" The employee just stared at me for a moment, and said, "For what?" with a distrusting look on his face.

At this point, I could not wait any longer. I saw the trashcan behind the distrusting employee, and made a mad-dash OVER the counter. I hovered over that trashcan for a good 3 minutes while every last bit of my insides emptied themselves on top of purchase receipts and product packaging. When it was finally over, I slowly got to my feet and looked at the young employee. An utterly horrified look replaced his distrusting gaze, and he ran from behind the counter as fast as his skinny little legs would let him.

My significant other was standing across the counter with a concerned, but amused look on his face. He kindly said, "I'll go get someone to take care of that trash can."

When all was said and done, and I had apologized up and down to a very kind and understanding store manager, I really did feel physically better! I made sure to purchase a spare toothbrush and toothpaste before I left, and cleaned myself up in the store restroom. As embarrassed as I was during the entire debacle, I really felt sorry for that poor, young boy standing behind the cosmetics counter. I never saw him again, and I often wonder if he opted for a new career path.

It is also with a big chuckle that I can look back at this incident and see the chaotic humor. In that instance, as well as others, I learned that while much of the general public may not understand our disease, they WILL deal with it, whether they want to or not!

I hope sharing my story will help you take a look at your own embarrassing struggles with this disease, and find the humor. I hope it will help you to remember that despite these pitfalls, life does go on, and we survive the most awkward of moments.

I invite you to share your funny story! Remember, you can post anonymously in the comments if you don't wish to be known. How do you feel now that you look back on it?