How Gastroparesis changes your life.
There it is right in front of you – your favorite meal. Whether it’s steak and a baked potato or five cheese lasagna, your mouth is watering at the thought of it. Is today the day you can eat a normal meal?
If you are living with Familial Mediterranean Fever, that could be a serious question. Part of the struggle comes in the fact that you may feel just fine now, but inflammation may already be building up inside your body.
As good as the food looks, do you dare eat it?
This post will look at the challenge of learning to eat again after a Familial Mediterranean Fever diagnosis. It will also cover gastroparesis, what it is, and how to live with it.
About the Author
Hi, my name is Scott, and I want to personally welcome you to Speaking Bipolar. If this is the first time you’ve been here, I am the man behind all the words found on the blog.
I am trying my best to live successfully with both FMF and Bipolar Disorder. This series, Living Successfully with Familial Mediterranean Fever, is a collection of the lessons I have learned about how to cope with the condition.
Disclaimer: I am not a doctor and do not have any medical training. This blog is made up entirely of my personal experiences of living with illness and what things I have found that help me. The same things may or may not work for you.
You can learn more about my FMF journey by visiting the Familial Mediterranean Fever page.
To Eat or Not To Eat – That Is the Question
If you’re living with FMF, you know it can be a complicated topic when discussing what to eat. Sometimes that juicy steak and steaming hot potato goes down just fine, and while it sits a little longer than you would like, there’s little more than the normal discomfort of daily life.
At other times, that scrumptious meal makes it as far as your stomach and then sets up camp. Hours go by and it feels like nothing has moved. Many times, nothing has moved, and if things don’t clear up, that meal you loved so much makes a violent parade back out the way it came.
If the latter scenario sounds familiar, you may have gastroparesis.
What Is Gastroparesis?
You’re likely thinking, “I already have FMF. Now you’re telling me I might have something else? When is enough, enough?”
Believe me, I feel your pain. Every time I have to check a new box on those health history forms I wish it was more the game of Bingo rather than the game of Life.
Gastroparesis, or delayed gastric emptying, is a malfunction of the movement muscles in your stomach. Usually, these muscles are strong and use a series of contractions to move food through your digestive system.
With gastroparesis, these muscles are weaker or ineffective at doing their job. The result is that food doesn’t pass through as fast as it should or may not move at all.
Your body is not designed for food to sit indefinitely in your stomach. If your meal doesn’t make it through the direction it’s supposed to be going, then eventually your system will push it back out the way it came.
I’m trying as hard as I can not to make this as gross as it is, but there’s no way around it.
What’s worse, is that what comes back up, even if a day or two later, is often not digested, but merely fermented and formed into hard balls.
I’ll stop there and let your imagination fill in the awful details.
Is There a Test for Gastroparesis?
There is a definitive test that can be done to reveal gastroparesis. Though it’s not always done the same way, this is the procedure I experienced.
I arrived at the medical center early one morning and was promptly directed to put on a hospital gown and then to wait in a cold room.
You know that hospital gowns provide almost no warmth and very little modesty. Needless to say, I was more than a little uncomfortable.
A few minutes later, my nurse for the day (yes, day) came in to see how I liked my eggs. There really wasn’t a choice, as they were going to be scrambled either way, but I did have a choice as to whether they would be runny or dry. Some options, huh?
After taking my order, the nurse went off to their small kitchen and proceeded to mix some radiative material in with my eggs and then cook them up.
As a side note, no one ever described exactly what that “radioactive material” was that she added. So far I haven’t turned green every time I get angry, but maybe that part is still coming.
She brought them back with some dry toast and gave me about ten minutes to eat everything.
Next, I was taken to a dark room where I got to lay down on a cold slab while they x-rayed my stomach. The goal of the first x-ray was to document how much volume the eggs and toast took up in my stomach. The irradiated eggs glowed on the x-ray screen.
A Full Day of Waiting
An hour later, I got to go see the nurse again and get another x-ray. As she adjusted her settings on her equipment, she told me that the text could last 3-6 hours, but most people got to leave right about the three-hour mark.
Immediately I knew I would not be part of that group. Never have I fallen under typical results for anything.
The second x-ray didn’t show much change. The nurse looked a little concerned but pretended everything was fine and sent me back to my waiting room.
And the Waiting Room
So, just for fun, I have to share my experience here. There I sat, in my flimsy hospital gown, wearing only socks and underwear in addition to the gown, in a regular waiting room. Other patients came and went, most wearing normal clothes, as I sat feeling open and exposed.
Add to this, I had not yet been diagnosed with FMF. At that time, I was running a near constant fever. That meant anywhere I went I was almost always cold.
Under normal circumstances, I would have had a jacket or a hoodie to keep me warm. It wasn’t until late in the day when someone finally took pity on me and found me a blanket.
I say this because I want you to know two things.
One, if you go in for this test, take something to keep you occupied. At the very least you will be there for three hours.
Two, if you are cold natured or running a fever, take someone with you and have them keep a blanket or jacket for you to use in between x-rays.
You can thank me later.
At the Four-Hour Mark
The x-ray at hour three had very little conversation. I could see the concern on the nurse’s face, but she didn’t say much.
Finally, I asked her, “Since this is three hours, can I go now?”
“I’m afraid not,” she told me, and it was off to the waiting room again.
For a normal functioning digestive system, the stomach should have less than 10% of its original contents at the four-hour mark. My four-hour numbers? We were pretty close to 50%, which isn’t the worst case scenario, but certainly not good.
Jump ahead to the sixth hour, and thank the Lord, the last x-ray, and I was still over 25%.
What Does a Gastroparesis Diagnosis Mean?
I am going to preface this part by saying how much I liked my gastroenterologist. While he did not have the best bedside manner, he was incredibly smart and thorough and helped me in a lot of ways.
When I left the medical center that day, even though I didn’t see the doctor that visit, I knew I had gastroparesis. Not only had the nurse basically told me so, but a dear friend with Lupus had just been through the same test and had told me what to expect.
What I wasn’t prepared for was the call I got the next day. The GI’s office called me early the next morning, the head nurse making the call, to give me my results.
This is a summary of how that conversation went.
“I’m calling to let you know you have gastroparesis,” she told me.
“Okay. What does that mean?” I asked.
“You’ll have to change your diet immediately. No meat, no fresh fruits or vegetables, no nuts, no dairy, limited grains.”
“Um?” I felt like I needed to say something but all I could think was, “Are there are food groups left?”
“How long will I have to eat this way?” I finally found the strength to ask.
“The rest of your life,” she said matter-of-factly. “Have a good day.”
Again, a very good doctor. The human touch from him and his staff? Not so much.
Gastroparesis and Familial Mediterranean Fever
What the doctor and his nurses didn’t tell me, and what might not be true for everyone, is that my case of gastroparesis is not consistent.
While there are times when eating meat or vegetables is incredibly painful and followed by unpleasant consequences, there are other times where the same meal doesn’t affect me at all.
There seems to be a direct correlation between the severity of gastroparesis symptoms and the stage of an FMF attack.
What I’ve Learned
The day after an attack, generally I can eat what I want. Usually, I don’t want to because I’m exhausted and just overcoming the worst of the dizziness and nausea, but I can eat a fairly broad diet.
The beginning of an attack, which for me often comes with little notice more than severe fatigue and a sore throat, I should only have liquids or easily digested foods like yogurt and mashed potatoes. This holds true for the worst part of the attack as well.
Unfortunately, far too often, I don’t know an attack is really starting until after I have eaten something I shouldn’t have. However, with each episode, I am learning a little more and getting better at it.
Choosing When to Eat
Another thing that has worked well for me is choosing when to eat.
This plan may not work for everyone, especially if you have blood sugar issues or have to eat with other medications you might be taking.
Happily, I don’t have either situation to contend with so I can eat on an unusual schedule.
For instance, if I know I have to go somewhere, I won’t eat in the hours beforehand. If it’s a morning appointment, I won’t eat dinner the night before, or a very small or liquid one.
One night a week I have Bible study. To have the best chance of making it to my study, I don’t eat at all that day other than a few pretzels or mashed potatoes.
Most of the time, this system works for me, but it’s not foolproof.
Then there is another digestive problem that is also part of living with FMF – dealing with constipation and diarrhea. I’ll go into that in another post, though.
Keep a Health Journal
If you’ve followed this blog at all, you know that I am a huge proponent for keeping a journal. Not only do I think it’s one of the most therapeutic ways to cope with mental illness, but it’s an invaluable tool for managing FMF and other chronic illnesses.
Your health journal is the place where you want to document how you are feeling, what activities you have been sharing in, and what you’ve eaten. It’s often good to list your body temperature, blood pressure, blood sugar, or any other statistic that is vital to tracking your illness.
If you’ve never kept a journal before, it can be frustrating and feel bothersome to start. Stick with it. That information will become the basis for you to learn how best to live with your condition.
You can read more benefits to journaling in the post 3 Reasons Why You Should Be Journaling.
Find Your Way
As I’ve said, this site shares my personal experiences of living with illness. No two people are exactly the same, so likely you will have very different experiences from the same actions.
Keeping a journal is the fastest way to see health trends, which things are working, and which things aren’t. I encourage you to start one today if you haven’t already.
If you’re new to the chronic illness arena, you will also like the post 5 Ways to Survive After a Devastating Chronic Illness Diagnosis. It includes helpful links for coping with FMF.
I would love to hear from you. What things are you finding that work for you? What things don’t? Please share your comments below or send me a message through the Contact Page.
Here’s something positive. Enjoy the poem video, Dreams of Paradise.