Hello and welcome fellow patient, friend or parent of someone affected by Inflammatory Bowel Disease (IBD). I am a medical school student with Crohn’s disease and I started this blog at the behest of a trauma surgeon who guided me through my weeks in the hospital and has become a mentor and friend. She encouraged me to start blogging as an avenue to share my perspective of living with and studying disease. In the boredom of recovery I felt compelled to try to articulate my thoughts, experiences and interests to hopefully provide some insight into living with Crohn’s disease.
You may be able to relate to some or many of my experiences but I hope that over time other patients, parents and friends will begin contributing to and enriching the content of this blog through comments or guest posts. I am not writing any of this to draw attention to myself nor do I think that I am “more special” than other patients, I can assure you I am that kind of person.
What I care about is increasing our understanding of life with an ostomy and/or IBD and sharing information to better educate ourselves as patients. I think that the physical and psychological challenges of living with IBD are underestimated by those without it to include many physicians. The responsibility rests on us patients to stop hiding away in pain and just say ‘screw it’ to any embarrassment. If this pattern of fear or embarrassment persists how should we expect people outside of the medical community to learn about what life is like with IBD beyond a research article?
What better time in history has there been for this kind of advocacy and education?…Remember the ALS ice bucket challenge? The successes of HIV lobbying? The power of the breast cancer movement? The IBD community should carefully look to other patient communities, particularly HIV/AIDS and breast cancer, who to their credit have essentially developed proven frameworks for changing societal views and massively increasing research funding.
My goals for the blog are as follows:
- Share my experiences with IBD and an ileostomy.
- Educate in layman’s terms about Crohn’s disease.
- Answer questions about life with Crohn’s disease.
- Give tips to patients about Crohn’s and ostomies.
- Review ostomy related products.
- Offer advice on IBD medications that I have experience taking.
- Seek advice from other current or future health care providers with IBD.
- Show PATIENTS that YOU ARE NOT ALONE.
The bottom line is that at times life with IBD can be really challenging and frustrating but at the end of the day just looking around at friends and family reminds me that life is good. So I hope that this year brings you good health and good times! I look forward to expanding this project with all of you so please don’t hesitate to contact me with questions or ideas. *Important reminder: I am not a doctor and only you and your doctor can reach medical decisions. So if you are consider changes make sure to discuss them with your physicians.