Every Friday for DTP Awareness Month, we’re featuring a champion patient. Each one shares their story in a different way, and each writes to inspire the community with their journey. First up, Danielle……
It’s like night and day. That’s how Danielle Crull describes her life before and after Gastric Per-Oral Endoscopic Myotomy (G-POEM). A certified optician from Dillsburg PA, Danielle works full-time at the optical shop she owns in Mechanicsburg PA. She operates this shop with her three children (also certified opticians). A Pastor at Connection church, Danielle also performs in a band (Christian percussion) with her children. She has a busy, active life.
Danielle was diagnosed with Type 1 Diabetes in 1994. Even though her diabetes was under control, Danielle began to have issues with her A1C and glucose levels. She could go all day without requiring insulin and then would experience high blood sugar at night. Her energy level dropped. Her doctor switched her to an insulin pump, to help better control her diabetes. She began to experience nausea, bloating, occasional vomiting, stomach pain, and early satiety. At first, Danielle tried a gluten free diet. This gave her some symptom relief as her gluten free diet lowered her fiber intake. Unfortunately, Danielle was experiencing constant symptoms. In 2012, Danielle’s Gastroenterologist (GI) performed an upper endoscopy exam to check for celiac disease. He noticed that although she had not eaten eight hours prior to the exam, she still had food in her stomach.
The GI sent Danielle for a Gastric Emptying Study (GES) and diagnosed her with Gastroparesis (GP). He wanted to put Danielle on Reglan* to help control her GP. After researching Reglan side effects, Danielle met with another GI to discuss medication options. He prescribed Erythromycin four days/week. Erythromycin is an antibiotic that has shown to improve GP symptoms. Danielle’s blood sugar levels returned to normal on the days she took the Erythromycin.
Danielle continued to have GP symptoms even with medication and diet changes. After 2+ years on Erythromycin, Danielle’s GI began to give her Botox injections to aid in managing her GP. Botox is injected directly into her pyloric sphincter. Botox injections and Erythromycin provided some symptom relief for Danielle. She continued to have Botox injections every 12 weeks until she read about the G-POEM study being offered at Johns Hopkins University.
Danielle provided them with her medical records and about a week later, she was in touch with Dr. Mouen Khashab to discuss participating in the G-POEM study. Since the Botox injections improved Danielle’s symptoms, Dr. Khashab felt that she would be a good candidate for G-POEM. In July 2017 Danielle had the procedure. For two weeks, Danielle ate a soft diet and took antibiotics. She began to gradually introduce foods back into her diet.
Mentally, adding new food back into her diet was tough. With GP, even GP-friendly foods sometimes cause symptoms. It took several months to feel comfortable eating a normal diet, but Danielle no longer has GP symptoms. Her A1C and glucose levels returned to normal; her energy level back to normal. The study coordinator has followed up with Danielle 3 months and 6 months after the procedure and will check in with her at one year after the procedure.
Prior to the G-POEM procedure, Danielle’s GES showed that after 4 hours, her stomach still contained 51% of the food she consumed for the test. After G-POEM, her GES results were normal. After 1 hour, 53% of the food consumed was in her stomach; 4 hours, no food remained in her stomach. Danielle no longer takes Erythromycin or has Botox injections for her GP. Is her GP cured? For Danielle, G-POEM appears to have resolved her GP symptoms and has allowed her to eat a balanced, varied diet.
G-POEM is not for everyone and some patients have not experienced the life changing results that Danielle has experienced. If you are interested in investigating G-POEM or any other procedure and / or medication options, discuss with your GI or health care professional.
*Reglan has an FDA black-box warning due to side effects. For more information please discuss with your health care professional.
Do you know of a DTP Champion? Or do you feel you are? Nominate someone, or yourself for a future patient spotlight. Head over to our Awareness Month Website and go to the Coaches Corner.