Hello Everyone,
I'm sorry that it has been so long since my last post, life got
busy and I keep putting it off. August is as good a time as any to write
a post because it also happens to be Home Parenteral Nutrition (TPN) and Short
Bowel Syndrome (SBS) Awareness Month. Over 5 years ago if you had
mentioned either of things needing awareness, my response would have been
"Yeah, okay" and not bothered to ask to many questions. But since my
diagnosis with SBS and need for TPN I have learned more than I wanted to about
both topics.
Short Bowel Syndrome is exactly what it sounds like. To be diagnosed
with SBS, a person only has about 2/3rd of small intestine of a normal person.
Most SBS'ers also have problems with malabsorption, diarrhea, hydration and
fatigue. SBS is caused by many factors like birth defects, Crohn's Disease,
injury, radiation enteritis after chemotherapy, surgery and blood clots. Since
each part of the small bowel is responsible for absorbing different things the
amount and area of small bowel a person has affects how much food and fluids they
are able to absorb to live. Most people have about 600cm (about 20ft) that they
are born with, I only have 79cm or 2.5ft. I am able to live without nutrition
supplementation but require daily hydration infusions to avoid
dehydration. I know of others that have the same about of small bowel and
require daily TPN infusion to stay healthy. Each one of us is different
in all aspects of our lives and our intestines are no different.
Some people with SBS require the
need for HPN or TPN (home or total parenteral nutrition) to provide the
nutrition their body needs to live. TPN was created by Dr. Stanley Dudrick as a
way to feed people intravenously when they are unable to eat naturally. Just
like SBS there are many reasons for needing TPN such as congenital defects,
gastroparesis, and mitochondrial disease. My first infusion of TPN was in the hospital
was several days before my surgery that resulted in SBS, the GI wanted to “beef
me up” before the surgery since I hadn’t been eating. Little did I know was
that infusion would be the first of many in the hospital and then at home. On
the first evening at home I received multiple boxes from ThriveRx which held
all the supplies I needed for TPN and tube feeding infusions. Talk about
overwhelming! Over six years later I am not longer on TPN but still require
daily hydration that uses many of the same supplies that TPN does – pumps,
tubing, saline flushes, port-a-cathater dressing changes etc.
So it’s fitting that SBS & TPN
have the same Awareness Months since they go pretty much go hand in hand. In
the 6+ years since I’ve had TPN, my life has changed dramatically. I went from
fully healthy to deaths door and back to a “new normal”, I have watched my boys
grow 6 years older and celebrate 25+ years of marriage with my husband (who is
also my nurse on sometimes). Lately, I’ve been reflecting on my life and where
it has gone, never would I have predicted that I would get a sick as I did,
stop working and figure out who I was all over again. The end result is that I am
happy with my life and where is headed. I interact with many people in similar situations
and feel that I have made a difference in their lives. My work as an advocate
for ThriveRx is more meaning full than any of my past jobs. SBS and TPN are not
ideal ways to live but without both in my life, I would be as happy and content
as I feel. Every day that I can Live, Love and
Laugh with those
I love around me or those that need to feel less alone is an awesome day for
me!
@ThriveRx #SBS #SurvivingSBS
Check out the cool video the Oley
Foundation has put together for HPN awareness week (I even know a few of of the
people in it!)
