We have compiles some of the best tips for managing gastroparesis from our patients and carers. Some things you might have not thought of or expect.
- Keep a food and symptom diary. “This becomes invaluable to help you remember your reactions to different foods and also helps the dietitian personalise a food plan for you” – Sandra
- Seek a doctor you are comfortable with. “Some patients may be afraid or feel embarrassed to change doctors. But not all doctors are specialised in dealing with gastroparesis, so if you do not feel satisfied with your treatment you can speak with other doctors until you find the right one” – Willie
- All your gastrointestinal symptoms may be motility related. “If some symptoms don’t improve like others with treatment, it could point to additional gastrointestinal issues like irritable bowel syndome, food intolerances, or small bacterial overgrowth.” – Caitlin
- If you’re having trouble with jejunal feeds. “If it is causing pain, you’re not nuts. Some people have heightened visceral sensitivity.” – Caitlin
- Symptoms between patients can vary greatly. “Not everyone throws up. Sometimes pain is more of an issue than nausea. It doesn’t speak to the severity of the gastroparesis either. Some have severe gastroparesis with few symptoms, some have it mildly with a significant symptom load.” – Caitlin
- See a dietitian. “Make sure you’re getting everything you need from your diet. If you’re not, supplements are important. In people who’s intake is significantly impacted it’s important to monitor things like electrolytes.” – Caitlin
- Barium testing involves food. “Tests that require ingestion of food (e.g. radioactively-labelled egg sandwich) can be quite brutal for patients, especially those struggling with chronic nausea and vomiting.” – Lea
- Avoid things that increase gas. “Carbonated drinks or alcohol can make you feel even more bloated.” – Caitlin
- Try to keep moving. “Physical activity encourages gastric emptying and refreshes the mind”- Caitlin
- If you suffer reflux or sudden vomiting, ensure you sleep with your head and chest propped up to avoid aspirating during sleep. – Caitlin
- Before diagnostic tests “Always double check which medication can or cannot be taken or find someone you can ask to find out.” – Lea
- People will say you have an eating disorder. “Yes, in the end it kind of feels that way because the thought of eating certain foods gives you a horrible aversion to it it actually becomes a disorder as such I still find it hard not too look sideways at a lettuce and not feel nauseous” – Tracey
- When stopping medication for tests “if you have been on them long-term you may need to stop for longer than the recommended 1-week period.” – Sandra