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In March 2002, I went
for treatment at the Cleveland Clinic Foundation.
I was told at that time I was not eligible for the gastric
pacemaker due to narrowing in my small bowel.
On March 10, 2002, I
started having uncontrollable diarrhea.
I was started on Immodium for ten weeks.
By mid May, I was requiring 2 liters of IV fluids every other day
to keep myself hydrated. By
the end of May, I was hospitalized because I was having 20-25 bouts of
diarrhea daily. I began having horrible fevers raging from 104-105 degrees.
I was placed on cooling blankets and Tylenol.
I was tested and they found CMV via blood cultures.
I was started on Gancyclovir (chemo agent/antiviral medication). The fever is now under control.
I had a colonoscopy performed that showed Crohn’s
disease. I was
followed up with CT of the abdomen. The CT scans showed Crohn’s disease in four sections of the
small intestine and thickening of the stomach wall also indicative of
Crohn’s. While
hospitalized, they decided I needed complete GI rest due to the
Crohn’s, so I had a Hickman Catheter inserted and started on TPN.
While hospitalized, I had a wonderful team working together that
was comprised of Infectious Disease, PCP, GI doctor, a nutritionist,
chaplain, massage therapy, and Reiki therapy (http://reiki.7gen.com/)
. I was sent home 1 week ago and I am now being followed by a home IV
therapy team, along with home health care.
I am currently on TPN
12 hours per day supplemented by 1 liter of fluids approximately
every other day. I can keep
down ice water, sugar free jello, Italian ice, and Popsicle. Luckily I have a
wonderful support system. My
partner of 9 ½ years and our children are very understanding of my
limitations. They are what
keeps me fighting.
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