IBD
Who has helped you the most on your IBD journey?
February 24, 2022
in IBD
I have pulled help and support from SO many areas, people, websites, etc since I was diagnosed in 2009. So many invaluable resources that kept me going when I felt like I couldn't do it anymore.
Who (or what) has helped you the most? Tell me a little story about them!
1 - 8 of 8 Replies
Care Partner of Adult
On my journey parenting my son with UC, I have to say the most helpful resource ended up being when friend who had managed his own chronic illness through dietary changes referred me to the book Breaking the Vicious Cycle and I learned about the specific carbohydrate diet, now also known as the IBD Anti-inflammatory Diet. I tried it myself first before putting it on my then 16yo son and found rapid improvements in my own inflammatory issues, though not bowel related (mine were arthritic and thyroid). When I then convinced my son to try it, he was able to stop his Entyvio infusions after only 3 infusions. I consider that evidentiary success. :-)
When I was first diagnosed in 2004, I only had google and had searched up so much information and research on Ulcerative colitis and other IBDs. I was looking for main stream information on the disease, how its managed, any alternative treatment plans, people who claimed to have "cured" it and more. Later on, I discovered a UC and Crohns Facebook group where I would troll the posts and comments to see what people were sharing but never really engaging to much because I didn't really want my business out online to a bunch of people that I didn't know and feeling like I didn't want my personal information online and attached to my name and face when I wasn't even comfortable admitting aloud that I had been newly diagnosed. I didn't want to accept it. Eventually I ran across a post from someone making humor in a picture his friends had captured him far off into some forest looking trees finding a place to take a crap and they were being paparazzi. For some reason this picture made me reach out to him and ask about the picture and the relationship with his friends. I wanted to know how he thought and how his mind processed things because anyone who was so comfortable in not making taking a poop in the trees a big deal with having UC has to have a different outlook. So we ended up keeping in touch online and he became my first UC friend and he lived in Puerto Rico. I ended up linking up with him and meeting his family when I traveled to PR with my sister for softball one summer. My next friend for support became a female who is now a heavy influencer in the Crohns and Colitis advocacy world and I met her only because her best friend was one of my teammates and roommates when I was selected to play on a tournament softball team and we went to Jamaica to play for a week. My mysterious disappearances and telling my roommates to not leave me and if Im not at the door to head out when its time to depart for games to come check in the bathroom had one girl ask me straight up if I had Crohns! Lol! Which shocked me at the time because I wasn't expecting that and I wasn't announcing my issues. But this conversation led her to tell me that her best friend had Crohns and I instantly was more comfortable around her for the rest of the trip and she introduced me to her bff and gave me her number and I was able to text her bff anytime about the most vulnerable unfiltered things that I could not ever imagine saying or showing anyone else. Also, I went to visit her for about an hour or two with my family as we were on a road trip and passing through her state. These 2 relationships were invaluable at that time in my life and I learned so much from them from there personal experiences and helping me navigate mine. The next big breakthrough was hearing about GWG forming. I always knew it would be great to have a community of people who shared the same experiences and I heard it a few times mentioned before and once at a Team Challenge information session meet up where I actually heard about it being put into works and then about a year or so later it was established. I can't remember if Butt Buddies was first and then GWG or vice versa since its been a couple years. But Butt Buddies was cool, small and intimate enough of a group to be around people who just got it and I looked forward to meeting with them monthly just for kicks. Girls with guts was game changer for me. I was so nervous to go but excited at the same time and Im glad I was able to go. I was a scholarship recipient the first year and had been every single year after that up until today. However the last two years have been virtual retreats and Idk if Ill be able to go for an in-person one these days. I kinda feel like I should have gotten a old head award or something for being apart for so long but that's another story for another day lol. Im at a point where going to these group events are more about sharing my experiences and helping people with all the knowledge of coping that I have learned over the years.
And I'd like to thank you personally for being the catalyst behind that great idea for GWG. It was a very big part of my life and I rock with you the long way because of it! Hence, why I am here in this forum! :-)
Patient
WOW. I have known you so long and never knew a lot of that. I'm so glad that our paths crossed and have now intertwined in so many awesome ways. I'm grateful for what Girls With Guts brought into my life, and mostly for WHO it brought into my life. Thanks for coming that first year...I really didn't know if anyone would trust us or believe in the idea we had. I can't believe this year is 10 years since Girls With Guts was launched...unreal!
Patient
Oh also...isn't amazing that so many of us have met people around the nation/globe and have so many awesome people to visit with when on trips? I think its so cool that I know people EVERYWHERE, and they're all people I can just be the real me with.
I totally feel the part about being the real you in the online spaces! One thing that was hard to grasp after my diagnosis was that I still had so much to learn about IBD. Just because I had a diagnosis did not mean that I was an expert on how the disease would manifest in my life especially from day to day. This is something that seemed foreign to anyone who did not have IBD. It was so important for me to feel comfortable just saying "I don't know what is going on or what to expect" and IBD patients online (mainly instagram for me) were the first people to make me realize that that was okay.
Patient
YES! That's a truly self aware moment. I've met lots of patients who just don't know what they don't know....but also can't acknowledge that. After talking with other patients, you can learn so much about yourself and IBD and that is such an important part of this whole process.
Patient
Sure, loads of doctors have been helpful from a medical standpoint but dealing with such a terrible disease at such a young age is an emotional and physical challenge on so many levels. My mom helped me understand that to be human is to have human problems. Those of us BLESSED with IBD just have a little more to deal with on a daily basis. Growing comfortable around food, understanding nutrients, supplements, and prescriptions. Managing stress. These are all difficult and can play off of one another.
Just another time when my mom was the most important person in my life ;) Love you, Mom