Rare Disease Awarness Day

Instead of filling you in on more of my story I would like to instead raise awareness for Rare Disease Day. A Rare disease in defined as disease or disorder affecting less than 245,000 people in the US (or 1 in 2000 in the EU). The over 6000 rare diseases can have varying symptoms from patient to patient and disease to disease. Many rare diseases have common symptoms that get overlooked and misdiagnosed leading to incorrect or no treatment. Also many of the diseases have no specific cure which can add pressure to the patient and their families either socially, emotionally and financially.

This years theme is CARE which can include special equipment, medicines, physical therapy, respite care for for patient and family and research. So lets all Join Together for Better Care.

So for now keep on Living Loving and Laughing!

More information can be found at http://www.rarediseaseday.org/

Crohn's? Chronic? Whatever?!?!!

This journey I am on started way back in the mid-80's as a teenager. The actual date is hard to pinpoint but during the fall of 1984 I started having changes in my bowel habits, pain in my gut, fevers and weight loss. The weight loss I didn't mind at the time since I was eating whatever I wanted and not gaining...not the best thinking I realize now but I was young and naive. My first diagnosis was an ulcer but I am sure I didn't tell the doctor all my symptoms (really, who wants to talk about going to the bathroom??) Finally in January 1985, my mom came home to me lying on the couch in pain and had enough. She called our family doctor and told him she was taking me to the ER to find out what was going on. Now I was an ER veteran for broken bones and stitches but this experience, was completely different. They were not sure what they were looking for so I received my first pelvic exam and my first sigmoidoscopy, not a pleasant way to be introduced to either. I was admitted for more testing (my first colonoscopy and barium series YUM! NOT!) which I thought was cool because I was missing school. Finally, I was given a diagnosis of Ulcerative Colitis, a script for prednisone and discharged. 

Things seemed okay for several months until I spent spring break in Texas with my sister. I am not sure what caused it, if anything, but I remember a lot of a pain and phones calls to Mom.  This was my first flare, I'm not sure if I was still on prednisone or not but soon after that I was referred to my first Gastroenterologist (GI). He scheduled another colonoscopy for the summer (the prep was castor oil! YUCK!) to see for himself what was going on. This time I got the diagnosis of Crohn's Disease and that it was chronic...what? Honestly what 17 year old understands what chronic means? Sure I understood the definition but not how it pertained to my life. The doctor’s office gave us some basic information about Crohn’s and the Crohn’s and Colitis Foundation (CCFA) but other than that I had no support or information on how to deal with this new thing in my life.

I have to go for now…just heard the dogs getting into something and the kids need to eat! So for now keep on Living, Loving & Laughing.

The first blog of many...I hope

I never thought I would start a blog but here goes! Life changing surgery 4 years ago caused more changes in my life than how my plumbing works. I find that I want to interact with others that have Short Bowel Syndrome, Crohn’s Disease, ileostomies and malabsorption issues. Prior to 2010 I had several bowel resections and never thought much beyond what happens after they take out the bad stuff and sew me back up. I never thought about what would happen if too much came out, just thought everything would sort itself out like it always had. As a wife & mother of 3 boys, I want to share what life is like having Short Bowel Syndrome and how I live it. I have had a lot of help along the way from my family, physicians, Infusion Company and others just like me to accept my new life. I am not a medical person so please don’t take what I say works for me and run to you Doctor, what works for one of us doesn’t mean it will work for all.

My hope for this blog is to provide inspiration and support to those with similar health issues. I might invite others to guest blog either from a patient, spouse, parent or caretaker point of view. I would like patients (new & old) to know that they are not alone but can find support either with me or others they might connect to on this blog. Feel free to ask questions and I will try to answer honestly and to the best of my ability. Living with chronic illness or conditions is tough…on everyone but we can lean on and learn from each other. So for now keep on Living, Loving & Laughing.