1. What is Domperidone and how do I get it?
Domperidone is a antidopaminergic drug manufactured by Janssen Pharmaceuticals. Domperidone is used as both an entiemetic, to treat nausea, and as a prokinetic, to encourage stomach contractions. It works similarly to Reglan but is safer for many people because it does not have the central nervous system side effects that caused the FDA to issue a black box warning for Reglan.
The FDA has an IND process that physicians can use to get domperidone approved for their patients. The process is not an easy one, but that is the only way to obtain it through a compounding pharmacy in the United States. The FDA determines which pharmacy can fill the prescription. Information on the IND process can be found here: https://www.fda.gov/drugs/developmentapprovalprocess/howdrugsaredevelopedandapproved/approvalapplications/investigationalnewdrugindapplication/ucm368736.htm
Some doctors will still write prescriptions so you can obtain if from other countries, but there is a possibility that your shipment may be stopped at customs.
2. Is Gastroparesis progressive?
Gastroparesis can progress, but doesn’t for everyone. Many people stay the same or even improve. But some people do find that the disease progresses. This can happen regardless of the cause of the disease or treatments used. Like everything else with Digestive Tract Paralysis, there does not seem to be a rhyme or reason as to how people are affected.
3. Will this ever go away? Do you get worse? Do you eventually need a feeding tube?
Not everyone with gastroparesis will need a feeding tube or TPN. Some people have very mild symptoms. And it can go into remission for days, months, or years. There is no way to know if you will get better, worse, or stay the same. Each person with gastroparesis has a different path for their disease.
4. Is this hereditary?
Gastroparesis is not considered to be hereditary. However, there are some causes, such as autoimmune diseases which can lead to gastroparesis, which ARE hereditary. So gastroparesis can and does run in families.
5. Can I get pregnant while I have gastroparesis? How will it affect me, and the baby?
There have been quite a few people who have gastroparesis and delivered healthy babies. Some have reported that their Gastroparesis actually got better during pregnancy! We have a Facebook group where you can interact with others who are pregnant, contemplating pregnancy, or who have already been through pregnancy with gastroparesis. You may request membership at https://www.facebook.com/groups/532377730222400/.
6. How does one deal with family, friends, or others who do not understand, some willing to try and others not, including at the events, especially those involving eating, that usually bring them together ?
This can be really difficult. For those that are willing to try to understand your disease, G-PACT provides printed information that explains gastroparesis and chronic intestinal pseudo-obstruction. You can receive copies of these pamphlets by writing to Carol Pasinkoff at firstname.lastname@example.org.
Many people will understand your issues if you can relate them to something others can understand. You can compare your symptoms to morning sickness or a stomach flu that never goes away and lasts all day, every day.
Some people are just never going to get it, no matter how hard you try to explain. It is difficult for people, in this day and age, to accept that there is a disease without a cure or even good treatment options.
At social events try to bring food or liquids that you can tolerate. Enjoy the people you are with, join in on conversations. Help the hostess. Keep busy and do not focus on the fact that everyone is eating.
7. What are the basics of the gastroparesis diet, and are there ways to make it more healthy?
The basic diet is low fat, low fiber and no red meat. Meals should be small spaced a few hours apart, up to 6 meals per day. Poultry, fish and seafood work best for protein. Fruits and vegetables with seeds and skin should be avoided, although some people have luck with removing the skin and seeds and cooking the item until it is very soft.
For those on a liquid diet, try to get the most vitamins and minerals you can. Nutritional drinks such as Boost or Ensure are good options. So are Carnation Instant Breakfast and Slim Fast. Smoothies are a way you can get fruits and vegetables pureed into a liquid form. And most soups can be pureed which will make them much easier to digest.
8. How do I know if I am in a state such that I should go to the ER for treatment, such as for hydration and nourishment?
Please consult your physician for his/her recommendation about when the ER is necessary. One thing to watch for is dehydration. Some symptoms of dehydration are: dry, sticky mouth; sleepiness or tiredness; children are less active than normal; thirst; decreased urine output; no tears, dry skin; headache; dizziness. Some signs of severe dehydration are: extreme thirst; confusion in adults; extreme fussiness in children; lack of sweating; little or no urination; sunken eyes; low blood pressure; rapid heartbeat; rapid breathing; dark yellow or amber colored urine. It is wise to go to the ER if you have severe diarrhea, massive vomiting, can’t keep down fluids, are disoriented and sleepier!