Who we are is the easy question. That's the four of us in the picture. I'm Mom Tricia, Dad Mike is on the left, Jordan (the ham!) is in front and Patrick (looking a bit grumpy) is on the right. And although our blog is titled, "The Family Crohn's" that is not our surname, but as you will soon learn it is who we have become.
Patrick, our oldest son, is living with Crohn's disease. For those of you that don't know what Crohn's disease is, it is a chronic, incurable autoimmune disease affecting the digestive system. I will add pages to this site with more detailed information and you can view Patrick's specific condition and courses of treatment via the "Blog" link at the top of this page.
So, why a Website? There are several noteworthy sites devoted to Crohn's and it's IBD (Irritable Bowel Disease) counterparts. Many offering invaluable information and newsworthy updates on the fight against this insidious disease. And although they offer support to patients, I was at a loss for a site that was strictly devoted to not only patients but the parents and families that love, support, struggle and cope along with them. Just like any other chronic disease, Crohn's affects everyone that loves the patient. The good, the bad and the ugly. If a patient is lucky, they have a support system to share the ups and downs with them.
With that said, my intentions began as purely selfish. I was at a loss for a place to express my feelings regarding Crohn's. The more I searched for sites devoted to caretakers and families of patients the more I realized it is a much needed resource. Especially for parents who like me have run the gamut with this disease, from early adolescense (or younger) through the beginning of adulthood (and beyond!). We are in the thick of this with the patient. Oftentimes we are their voice, their strength, their advocate. I wanted a place for us to join together and share ideas and our hope for a world free of this disease.
I want this to be a place where other parents of IBD patients can share their triumphs and vent their frustrations. I also want it to be a place where patients can voice their fears and hopes. A place where families can unite against a common enemy and share their experiences.
Crohn's is an ugly disease. There is nothing pretty about it. Our family has learned to often find the humor in the horror. The hope in the fear. The laughter through the tears. We hope to share it all with you and offer you the support you need as well as garner support from you.
Feel free to look around our site and comment on our blog, introduce yourself on our message board and sign our guest book. This site went live on 10/13 so it is still somewhat under construction. Tell us what you would like to see and how we can help support the online community of families living with Crohn's. We would love to hear your suggestions. We look forward to sharing the journey with you!
**Before we continue, an important item to note: We are not physicians and one of the most frustrating aspects of IBD is that every patient is different. There are no hard or fast rules when it comes to the treatment of Crohn's or IBD. The experiences of my family may differ dramatically from that of other patients and their families. Nothing noted here should be taken as medical advice. Always refer to your gastroenterologist and general physician's advice.