Tips for living with gastroparesis
In celebration of gastroparesis month this year, we asked one of our biggest advocates for the cause, Jennifer, to share some of her tips for living with gastroparesis. Gastroparesis is a terrible disease for which there is no cure. However, our hope is to help you navigate your diagnosis with the advice of someone who was ‘been there, done that!’ Check out these 4 tips for living with gastroparesis!
1) Take things one day at a time.
It is going to feel very overwhelming when you are first diagnosed. It is going to take a lot of trial and error to find out what you can and can’t eat. I highly recommend keeping a food journal when starting out so you can see how you tolerate different foods. CDHF has a great app that you can download if you have an iPhone to help you keep notes and track your symptoms as well.
Everyone is different and something that may be well tolerated by one person may not be tolerated at all for another person. Generally speaking, higher amounts of fiber are usually not tolerated well with gastroparesis and can cause serious issues with our stomachs. Try and avoid foods that are high in fat and avoid the skin of fruits and vegetables as that can be harder for the stomach to break down. You can still try and see what fruits and vegetables you may be able to tolerate just remove the skins and cook well (having them cooked to a state that is a bit mushier can make it easier to digest).
Some things that I have found helpful personally was to make my own electrolyte drinks so I am not always relying on things like Powerade and Gatorade. You can make alternatives to things like Boost or Ensure with ingredients that you can tolerate. Try and learn to make your own both broth. It can be vital to have it on hand when eating food is difficult and it provides a ton of essential vitamins and minerals. I use Ginger Candies a lot to try and help with nausea. I find either Gin Gin or chimes brands work the best for me.
3) Don’t give up on finding the right medication for you
There are not a lot of medication options for treatment but don’t give up if the first medication that is prescribed for you doesn’t work. Not all medications are going to work for everyone but you may be able to find one or a combination of a few different medications that could help to ease the symptoms of Gastroparesis. If you are finding that you have gone through most of the traditional medications and nothing is working or if medications stop working, don’t be scared to look into medical cannabis as a potential treatment option. A lot of us, including myself, who have had all treatment options fail have started to turn to medical cannabis to help treat symptoms. With the proper strains and terpenes, a lot of patients are finding that it is helping them control nausea, increase appetite and vomit less frequently. It can also be helpful for the abdominal pain that a lot of us get with Gastroparesis.
3) Develop a strong support group
We have a wonderful online support group on Facebook. A lot of us can experience isolation because of this disease. It can be incredibly overwhelming to try and go through everything without a support system. Unfortunately, not all of us have supportive friends and family and that can leave us in the dark trying to deal with it all alone. Without a support system in place, that burden and stress can wreak havoc on our bodies and minds and make things much harder than it needs to be.
I spend a lot of time on Twitter searching Gastroparesis related stuff, in turn, I end up finding other people with Gastroparesis and it makes it easy to connect with others who are experiencing similar things. Having something like our online support group you have a ton of people who truly understand what you are going through with this awful disease and are there to listen and offer advice if we can. Knowing that there is a network of people that you can depend on to be there for you can help so much.