There Are Different IBD/ostomy Organizations For a Reason

Throughout my life, my mom has always told me that everyone fills a certain need for us. There is a reason why someone is in our lives even if we can’t pin point the reason the moment it is happening. I have come to believe the same is true for the numerous IBD/ostomy organizations that are around today.

This past month or so has led me to really think about what a difference each individual organization that helps those with inflammatory bowel disease has done for not only me but also to help improve the lives of those people who are suffering from ulcerative colitis or crohns disease. I want to focus specifically on five foundations that have impacted me in enormous, yet very different ways.

I want to start with the Crohns & Colitis Foundation of America and the United Ostomy Association of America. Both of these organizations have helped me from afar. I have honestly not benefitted in any hands on ways but knowing that these two foundations existed during various stages of my illness was very helpful for me to keep in the back of my mind. While I never did attend a support group at either the CCFA or the UOAA, I knew they were offered and that in and of itself gave me an itty bitty sense of hope when I was at my worst.

The Intense Intestines Foundation is a fairly new organization that really helped me open my eyes to see what I needed to do to achieve some kind of inner peace last year. Their motto is “Never Stay Quiet” and while that really does seem so simple, when I was reading a blog post of theirs one day, I saw those words and it just struck a cord with me. For the first time, it was like I really truly knew exactly what I needed to do if I had any hope of getting out from the hole I felt like I was in. The Intense Intestines Foundation’s slogan paved the way for me to pour my heart and soul out to my parents in an almost nonstop two hour long screaming and crying event. This opened the door for me to start group therapy where I began really feeling comfortable opening up about what my body had been through to others in person after 12 long years of keeping most things inside.

The Great Bowel Movement is an organization who I found has really desensitized me to bathroom humor. The way the two cofounders were always able to laugh and make poop jokes initially astounded me but after getting to know them a little more, I found myself thinking how awesome it was that they were able to laugh about this normal bodily function. The mission of The Great Bowel Movement is to empower patients and spread awareness. They created clothing to get people talking about their IBD, Jpouches or ostomy. In my mind, this organization is the one that does the most to take the stigma out of living with crohns disease and ulcerative colitis which I think is probably tied up in their sense of humor and mission to desensitize people.

The weekend I participated in Get Your Guts in Gear changed my life. It is a two day bike ride (I crewed) but it is really so much more than that. It was a family. Megan, one of the co founders of The Great Bowel Movement, had been talking to me about it for a while prior to me signing up and thank God she did. GYGIG provides a weekend of escape in a way. It allows you to connect with other patients who are going through similar medical challenges. It was the first time I was able to be myself. It was the first time I “embraced my community.” I had gone from barely leaving my house for more than four hours at a time to spending the weekend with complete strangers and had a blast. Get Your Guts in Gear is like sleep away camp for adults who suffer from inflammatory bowel disease in some ways (and if sleep away camp was only two nights.) The camaraderie and support was incredible. It opened up a whole new world for me and I am so grateful to Jay Pacitti for creating this amazing ride and event.

There are a lot of different organizations dedicated to promoting awareness, education and research for those suffering with a form of inflammatory bowel disease. They all have various ways of operating in order to go about obtaining their specific missions so that they can help those individuals whom they are trying to reach. We as a community are lucky that there are so many wonderful foundations tailored to being a support system for those of us who suffer from IBD and our families.

As with anything else, you may need to “shop around” so to speak to see if there is a foundation that is more appropriate for you in your time of need. An organization that I click with and find to be a great source of comfort to me during the difficult times may not necessarily be the right one for you. So just keep in mind that there are a lot of wonderful foundations out there that all bring different things to the table.