Clear liquids: jello, broth and ginger ale
My week started out good! Fall weather, an autumn candle, my favorite fall music. And then, WHAMO! Tuesday morning at 1:00AM I was hit with a severe GP Flare!
My ME/CFS illness involves a lot of dysautonomia – a dysfunction of the autonomic nervous system. This is the part of our central nervous system that regulates all of our automatic body functions, including digestion. GP is short for Gastroparesis, the slow emptying of the stomach. It can be caused by a variety of things, but in my case, it’s because my ANS (autonomic nervous system) is not functioning properly.
A flare can involve pain in the upper stomach or near my belly button, nausea, and at it’s worst, vomiting and diarrhea.
This week, I’ve been dealing with one of the worst flares I’ve had in several years! I can not explain why. I just have to roll with the punches.
Sometimes I can feel my stomach slowing down and I know I have to be very careful about the things I’m eating, even going to “Boost” for some meals, until it feels better again. This time however, it was one of those that hits without warning! I awoke in the middle of the night to that recognizable pain followed by vomiting the dinner I eaten 8 hours earlier. It should have left my stomach by that time, but this is the problem with GP – the food sits there instead of being digested.
I’m sorry if that’s too descriptive for some of you who are reading, but I know that there are others with ME/CFS dealing with this too. But since I was lucky enough to end up at the Mayo clinic for a diagnosis, and with a great GI who has helped me deal with it at home rather than the hospital, I want others to be able to read my experiences and maybe glean something helpful.
So I thought I would share some of the steps I’ve gone through this week. I am not out of the woods yet – I’m afraid this is going to be a long one.
Step 1: My first step is to go to a completely clear liquid diet. My goal is to stay hydrated without needing IV fluids. However, there have been times that it is so bad I needed to stop putting anything at all in my stomach. In those times, my GI will order 1-2 days of IV fluids at home to see if we can move into oral fluids. If I can’t, I have to head to the hospital.
There aren’t many different flavors when it comes to clear liquids. Clear juices, clear broth, and jello. I also like a good ginger ale, because the ginger can reduce the nausea. This time I also included some coconut water for electrolytes.
This step can last a day to a week or more!
Full liquid: pudding, broth and soda crackers
Step 2: If I’m tolerating the clear liquids well, I move to a full liquid diet. This means things still need to be liquid, but can include cream of wheat, cream of chicken soup, pudding or custard. If I’m doing well, I may include a few soda crackers. Sometimes I try this too soon, and I have to go back to clear liquids. I also add in Boost or Instant Breakfast. (I have also heard “Orgain” is MUCH better for us than boost, but I haven’t tried it yet)
I was told at Mayo, that one could basically live off Boost and almost off Instant Breakfast. They both have a lot of sugar though, and I get pretty tired of the flavors after a while. I drink vanilla boost and chocolate Instant Breakfast so I can alternate the taste. (straws in my drinks and my Boost help me to sip slowly put smaller amounts in my stomach.)
As this full liquid diet goes on, I am usually anxious to chew something. So I often send my hubby to the store for some gummy bears and caramels. This time around he also bought me some jelly bellies which has been really fun for a unique flavor while not really sending anything into my stomach!
My coconut ginger rice
Step 3: If I’m tolerating the full liquid diet, I add in rice. I have created a rice dish that I love and that I enjoy at this stage. I put a full cup of coconut milk with a cup of water and 3/4 cup of rice. I also chop up a couple pieces of candied ginger. Then I cook the rice in this. The coconut oils in the coconut milk seem to be the best fat for me to start with and the ginger helps with nausea. Sometimes I put a little honey over it. (I made some for this picture thinking I was ready, but it’s going to have to wait in the fridge a while longer)
Step 4: At this point, if I’m doing well, I’m usually getting very hungry. (This can be anywhere from a couple days to a couple weeks) I slowly add in soft foods like applesauce, toast, and scrambled egg. Once I can eat toast and scrambled egg, I’m usually back to my careful GP diet.
This time around, I’ve tried to get to the full liquid diet a couple of times. I’m not tolerating it very well, so after 5 days of clear liquids and a little bit of full liquids, I am not dehydrated, but I am feeling very weak and dizzy. I’m sure the lack of eating doesn’t help all the other issues of my immune disorders and dysautonomia.
This website, Gastroparesis Diet, was very helpful in figuring out these steps. The other part is just listening really carefully to my body and going very slowly, backing up if I’ve moved forward too fast, and being patient.
If you have ME/CFS and you have periods of pain and nausea, you might think through trying my steps and read the website above for food ideas. The truth is, many of us have Gastroparesis or transient Gastroparesis. You don’t need to go through all the testing to see if these ideas and the diet above will help. Remember though, that just because a food may be tolerated by most GP’ers, it may not be one you can tolerate.
Now, many of you may be thinking, “Aren’t there any medications you can take?”
Well, yes, I do take one regularly that helps a lot with motility, but it doesn’t prevent the flares. I had a dystonic reaction to the most common one, Reglan, so I am on a less common one. I can have a flare when I eat the wrong thing, or I can have a flare for unknown reasons. But in general the motility medication does help.
There are medications for stomach cramping that a GI can prescribe, and they help in less severe flares, but I don’t find them helpful in these severe situations. Pain medications are a catch 22. They reduce the pain, and they decrease the motility. So, though I may be out of pain, they may make my GP worse. These are a last resort medication.
Nausea medications are wonderful because they help me stay on the liquids and avoid the IV’s or hospital. However, I have been warned that the most common one, Phenergan, is not good for those with dysautonomia. They mess up the ANS even more. And they make me really sleepy! I prefer Zofran – which works very well for me and doesn’t put me to sleep. It doesn’t stop my stomach from purging a meal that won’t digest, but when it’s empty, it does help me keep liquids down, if I sip slowly!
I hope this helps some of you, who also struggle with ME/CFS , figure out how to deal with some of your stomach issues. And for my friends who are just “trying to get it” – thank you for bearing with me and hearing about one of the most unpleasant flares I get.