Kat was nine years old when she was diagnosed with Crohn’s disease. Years later, a fistula opened from the inside out, acting like a homemade ostomy, but she didn't get proper medical care. She went on to college, hiding the secret hole in her gut, studied, worked and struggled to pretend everything was normal.
By her senior year, she couldn’t take it anymore. She wrote to a well-regarded health institute asking for help, and was encouraged to come quickly for a consultation. That’s where she met the surgeon who performed her first bowel resection. He tried to preserve as much intestine as he could but unfortunately had to remove 85% of her total intestines.
After surgery, Kat had a brand-new ostomy with the possibility of getting her intestines reconnected in a year or so, if she healed well. She was almost pain-free for the first time in fifteen years. She went back to school, but over the course of the following six months, she was in and out of the hospital to get rehydrated and nourished. She went back to her surgeon who then officially diagnosed her with Short Bowel Syndrome (SBS).
After her diagnosis, Kat began taking daily IV nutrition at home. She hadn’t been well-nourished or hydrated since she was 7 years old, so Kat was excited about her PS regimen. TPN didn't stop her from traveling to Europe. A year later, her surgeon was able to reconnect her intestines. After Kat began seriously pursuing her acting career, she found that PS came with challenges. She was infusing 5-6 liters of TPN and hydration over 12-16 hours every day so she couldn’t sleep more than an hour or two at night because of frequent bathroom trips.
Kat was feeling frustrated with her total parenteral nutrition (TPN) regimen, so she began to explore different treatment options with her healthcare team.
Through her research, she heard about a peptide being used in clinical trials at Intestinal Rehab centers. Now called GATTEX, it’s a prescription medicine used in adults with Short Bowel Syndrome (SBS) who need additional nutrition or fluids from IV feeding. She was persistent about getting into a study. The doctors explained the possible benefits to her, as well as the possible serious risks, including making abnormal cells grow faster, polyps in the colon and bowel blockage.
GATTEX was studied in a 6-month clinical trial of 86 adult SBS patients who needed to use
PS at least 3 times a week for at least 1 year. GATTEX helped the majority of patients:
GATTEX 63% reduced PS by 20% or more
Placebo 30% reduced PS by 20% or more
GATTEX 54% achieved at least 1 day off PS
Placebo 23% achieved at least 1 day off PS
Kat is a real patient
taking GATTEX.
Over time, while Kat was on GATTEX, her doctor was able to cut her weekly IV nutrition back. She’s now infusing 5 liters a week instead of 5 liters a day! She’s hooked up to one liter of TPN four nights a week for eight hours and during one of her 3 nights off of TPN, she infuses one liter of hydration over four hours.
Kat did experience gas and bloating, but that’s just her experience. Everyone is unique, and responds differently to treatment. Her doctors continue to monitor her condition, including any side effects.
On the nights she’s spending 4 hours infusing hydration vs. 12-14 hours infusing TPN, she can stay out later to socialize with friends and go to a restaurant for dinner. But people with SBS have to keep up communication with their doctors and healthcare team.
Now that she spends less days hooked up to TPN, Kat plans on traveling more, spending time with friends and working on her book and other projects. Kat feels a personal responsibility to keep going in her life. She believes that on the other side of heartbreak, there's wisdom.
If you’re living with SBS or you care for someone who does, you aren’t alone. Schedule a call with a GATTEX Patient Ambassador through our mentor program, SBS Connect, or see if there’s a live event in an area near you.
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Important Safety Information: GATTEX may cause serious side effects including making abnormal cells grow faster, polyps in the colon (large intestine), blockage of the bowel (intestines), swelling (inflammation) or blockage of your gallbladder or pancreas, and fluid overload.
Click here for additional Important Safety Information.