Yesterday was my 2 month blogiversary which is hard to believe but during this time I have crash courses on online patient communities, social media, crowd funding, provider education, grant applications and much more. Any accomplishments are due to the support of Dr. G (x3), friends, family, other bloggers (VeganOstomy, Stephanie at the Stolen Colon), future colleagues in the medical profession and most importantly fellow patients from around the world. I am fortunate to have stumbled into this online world of patient support as it has opened my eyes as to how far patients with IBD/ostomies have yet to go to improve patient, provider and cultural awareness about these diseases. Here is what we’ve done so far:
1. Blog Views: 10,207 views in 8 weeks from 30 countries (and 1 view from the European Union-not sure what to make of that) CLICK THE IMAGES TO SEE WHICH COUNTRIES PATIENTS ARE VIEWING FROM
I never expected so many views. The power of social media in connecting patients and providers is impressive and to me I envision online platforms being the future of support groups.
2. Patient Education/10K Fundraising: Yesterday I completed a 10 kilometer road race (6.2 miles) with my team the OstHomies. We raised approximately 4,000 USD which will be donated to the education of new ostomates and patients with IBD. Feeling alone/overwhelmed as a new ileostomate and patient with IBD has given me an appreciation of how grossly underfunded patient education is, which is why these funds will be directed completely to educating patients. (Thank you so much to all the donors and I will have pictures/video in an upcoming post.) The unacceptably high rates of preventable complications among new ostomates is something that needs to be improved upon, particularly at hospitals like my own which serve a high proportion of indigent patients. New ostomates need succinct, patient-centered and credible information to better prepare them for self care. As a patient and future health care provider I feel an obligation to develop innovative educational materials to improve patient quality of life and cost effectively reduce preventable complications. In addition to these efforts I am trying to get my hospital to set up formal support groups for ostomates and patients with IBD because these services essentially are non-existent where I live.
3. Future Provider Education: Educating and supporting fellow patients is essential to improving patient’s quality of life but I have also been realizing that educating providers/future providers on the realities of life with IBD is equally important. Therefore, with the help of a classmate of mine and a pharmacy student we have organized a patient panel which will be discussing/answering questions on living with Crohn’s+ileostomy (myself) and Ulcerative Colitis (my two friends). This will be the first student led patient panel at my school of Medicine, but the three of us hope that it paves the way for an annual panel to talk to the new medical school class about life with IBD and ostomies.
4. Future Blog Work: I have quite a bit of new material in my head that I am still working through but here is some upcoming work: bag bracketology reviews (I have spoken with Convatec reps who are sending me more samples and I am going to get Coloplast Sensura Mio’s to try out as I know these are a hot new item…we will see), mor patient tip lists, “take a closer look” posts on IBD related drugs, more legislative work to see about resurrecting Ally’s Law in VA, possible interviews with WOC nurse, guests posts and more.
There is much more going on behind the scenes! Will keep you posted as things develop! If you have any questions/comments/suggestions please leave them here or email me at firstname.lastname@example.org