Managing any form of digestive disorder or problem is exhausting, frustrating, depressing and just plain hard.
I remember when I first got sick, being in excruciating stomach pain doubled on the floor of my dorm room crying because I just had to call out of work for the first time at a fairly new job... that put me in a rut. Going to work or school caused me a great deal of anxiety which in turn caused my symptoms to be 100 times worse. I drank all the herbal tea I could, started taking products to calm my nerves and help my pain, but nothing seemed to help me cope with the fact that I had these unknown issues going on within me.
Not knowing why you feel the way you do is scary. I went to the emergency room twice, urgent care once and the to my doctor 2-3 times. I took different tests, ultrasounds, scans, tried elimination diets- everything. The coping advice out there is low when you have no idea what's going on with your body. The only piece I have for that is to listen to your body. You can feel when something isn't right; for me, I KNEW deep down that there was something going on with me. The doctors thought it was a food allergy or stress- I knew it was more than that.
When I started losing weight I could feel it in my body. I was fatigued and my body ached. Though happy at first that I could fit into my jeans better... the weight kept coming off. How do you cope with that? Honestly, I'm not quite sure how I did. I went on throughout my day trying to eat more and more, and go to work and school trying to not completely hate it. When I had a better day I rejoiced and when I didn't, I had people to talk to about it. I googled a lot and I worried a lot, but I continued on every day.
Months later, once I found out I had GP, there was a moment of anxiety over what that meant. My gastric emptying results were far from the normal range and that scared me. There was also a moment of peace knowing that that was the answer to all the pain I was having... but then there were many moments of stress because of what it now meant for my diet and lifestyle.
Through all of this, having had GP for a year now, here are the ways I am able to cope with it:
Meditation:
I am a business major, but for an elective I decided to sign up for a 3 credit "Mindfulness Based Stress Reduction" class. It was the best thing I could have done that semester and one of the main things that has helped me cope with this disease. Being able to meditate has helped clear my mind and calm my stomach, both of which helped me sit through all 2 1/2 hours of the class. I read books on meditation, listened to guest speakers, and practiced meditation on my own at home. It has helped me to digest my food better before bed, helped calm my bowels, and even get rid of the headaches I would get. I highly recommend that people try meditation. It is okay to try at home, but I will always recommend taking a class and being taught how to do it properly.
For me, I enjoy meditating both morning and night, drinking a nice cup of tea after, then reading a book or doing anything that's relaxing.
Acupuncture:
Acupuncture (read my other blog post for more details) is the only reason I am 95% pain free today. If you have GP or any digestive issue and you haven't tried acupuncture, you need to.
Support system:
Having a support system is crucial to help cope. I was able to talk to my parents, siblings and boyfriend about it. Being able to tell someone how you have been feeling opens up conversation for suggestions. I was constantly getting suggestions on what to do or take to try and help my symptoms. It is always good to know you aren't alone and someone actually cares how you feel during the day- having that alone will calm your nerves.
See a Nutritionist:
Seeing a nutritionist (see my other blog post) is one thing that has helped me cope with what I can and cannot eat. They provide suggestions of foods to try to increase your overall nutrition. For example, foods that are high in calories and in protein will help you maintain weight, while keeping energy up. For anyone with digestion issues, you constantly fear food. Seeing a nutritionist is one way to diminish that fear and to have a better quality of life.
Research:
Once I got diagnosed I was constantly reading health books; I still do. I enjoy educating myself on digestive disorders- that helps me cope. Idiopathic gastroparesis is a disease that doctors still have no idea what causes it, and that is a bit scary to me. There are around 1.5 million people in the U.S. that have this disease. This may seem like a lot, but out of the over 329 million people in the U.S. it isn't that many. Researching had its pros and cons: it was nice to read about herbal remedies to try, which ones aid digestion, as well as reading stories of other people who have had success with their GP, etc. But it wasn't great to see in my research over and over again the "complications" of the disease and the "decreased quality of life" that occurs. It is also hard for me to read stories about pregnant women with GP having a hard time. They end up having complications because their body can't get enough nutrients, or that their pregnancy is fine but after they have their baby, their symptoms are worse than they ever were and end up not being able to take care of themselves, let alone their child. Even with the negative stories and scares, it is always good to be informed.
Stretching:
Exercise is something that is difficult for people with GP. I can hardly get up in the morning to go to work, let alone go to the gym or go for a run. The decreased fatigue is real, and it's because what we're able to eat is not enough nutrient-wise, and if we are able to eat more, our body does not absorb the nutrients like it should; that is a reason we lose weight. I enjoy being active so it's hard when I can't be. In order to maintain my weight I have to increase my calories, a lot. That alone is a struggle because of what I'm able to eat and my eating schedule. Exercising burns calories- I'm not saying don't exercise, but you can't just go to the gym and stay a half hour on the elliptical while still not being able to eat the foods you should be.
Another reason exercising is hard is because it hurts. With GP your stomach kills you most of the time, or you get cramps, under rib pain, your body aches, your back hurts, etc. Going for a walk around my block just about killed me for months. What I do now to help, is stretch. I sit on the floor and stretch, do yoga on an empty stomach, and lift weights at night/in the morning, that helps me. It makes me feel like I'm doing something, while not overdoing it, which has helped me cope and feel like a more normal person.
Feel your way to healing:
Let your feelings be valid. For a while I thought, "there is far worse that could be happening to me", but at many points I'd also think "this is the worst thing in the world, I do not want to live a life like this". The problem with the first statement is that while yes, you could have cancer or be hit by a bus, lose an arm or a leg, suddenly go blind, etc., but how you feel is important and no one should ever say anything different. No one should ever say "well it could always be worse". That is not a statement to say to absolutely anyone - you should listen and try to comfort that person. On the other hand with statement two, you can't stay in that rut forever. A HUGE part of healing yourself is by staying positive. Though hard to do, brain-gut connection is a scientific thing, it is real - what you think will change how you feel.
Balancing those two statements is hard to do. You need to find a happy medium. Realize that what you are going through is rough and no one likes it, but also be grateful that you're still alive.
What are the ways you cope?
-Loreal
Summary
Here is a list of things that help me cope:
1. Meditation
2. Acupuncture/belly breathing
3. Support system
4. Seeing a Nutritionist
5. Research
6. Stretching
7. Feel your way to healing
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