Friday, June 22, 2012
The Short of It
I found a new website, I hadn't heard anything about it in the UOAA circles. I haven't explored all it has to offer, but have found it promising thus far.
I love finding new resources, whether it's for personal or business use. It can be addicting, the thrill of the hunt for helpful resources and the rush of victory knowing that you've found a gem that will be a great asset to you or others. I've had to spend a large amount of time researching resources for clients I work with. It provides a great sense of satisfaction locating, pursuing, and obtaining a community resource for someone; knowing that you're helping to make a difference in the lives of others.
I believe this new website will be able to do just that, to serve as a unique educational and supportive resource.
Would you like me to get to the short of it now?
Okay, okay....it is Short Bowel Support!
This is a website specifically for those suffering from Short Bowel Syndrome (SBS). It offers information about SBS and the body, treatment, lifestyle support, resources and community forums.
One thing I've found very interesting is the SBS survey that is available for visitors to complete.
The Survey Results help us to view the demographics of individuals with SBS so that we may better understand who is most at risk and the primary causes of SBS.
For instance, would you have suspected that the majority of SBS sufferers that completed the survey are women ages 18-35, followed by ages 46-55? I don't know what this boils down to other than I find it interesting. At least it may be helpful for focusing education, support, and treatment to those most affected.
This community support and information would have been helpful to me in high school during my most trying period with SBS. I tried over the counter medications that worked for a short period of time and then the narcotic strength Lomotil until my body went haywire, as discussed in A Look Back. I even changed to the Sub Q injection medication Sandostatin until I had built up such a strong allergy to the medication that I was unable to move my elbow until discontinuing the medication and all traces of the Sandostatin were out of my body. For almost a year, this combination of medications was not effective for me. Slowly but surely, I was able to only use the Lomotil and to reduce my dosage to 4 pills a day from 8. With this amount, with consideration of diet, the uncontrolled is now controlled.
I look forward to exploring the Short Bowel Support's website further, I hope you will as well.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.