There are so many things the doctors didn't tell me when it came to my digestive disorder. Here is what I have realized and faced over the past year.
First off, doctors still don't have much information on what the cause of idiopathic gastroparesis ("gp") is (hence the name), or how to really treat any form of it. I wish there was more research being done, but for now it's not fully the doctors fault for not knowing much about the disease.
When I went for an endoscopy earlier last year, I was grateful that the doctor who did it had at least a little knowledge of gp. After the procedure was over, he came up to me and said that he was pretty certain that's what I had. He explained what it was, saying that it's "caused by stress". He told me a story of a famous hockey player that found out he had gp because he was throwing up and would become very sick before games due to his stress.
Now, is stress a reason to get a digestive disorder like gp? I really do not think so, or else there would be significantly more people with it. Stress definitely doesn't help, but there are many different things that could potentially bring gp on. The last thing he told me was to "eat a lot of olive oil; put it in your cereal if you have to for more calories".... he then sent a referral for a gastric emptying test to confirm I had gp, which I did, and then that was it... that was all the information I had on my newly found stomach disorder.
What I've had to find out by myself and with the help of family is a growing list, but here are the top things that every gp'er and their family/friends need to know:
1. You will have a hard time balancing/maintaining your weight.
The GI doctors didn't tell me anything regarding my weight, other than to go to a nutritionist if I kept losing more. They didn't tell me that with gp, your body has a hard time absorbing nutrients from food.
Family and friends - do not assume that we aren't eating! Eating with gp is difficult: you have to eat small amounts of food, but specifically food that will settle with you and digest easily - which is very limited! If you have bowel issues, that limits your choices even more. If you're gluten free or dairy free, there goes more of the food pyramid. It's hard to balance what to eat, when to eat, and how you eat it. Sometimes you will put one bite of food in your mouth and suddenly feel so full you literally cannot finish that bite. Maintaining my weight is still a struggle; I try not to think about it as much anymore, but I do have to check it about every week to make sure I'm staying on track.
2. You will have a hard time eating and your appetite will be low.
Anytime food I can't eat or wouldn't eat is mentioned, I get a sick feeling to my stomach. It's hard to go out to a restaurant with someone or go to someone's house when your food is so limited and your appetite is gone. It's hard to be at home when you want a snack, but all snack food out there is bad for gp or isn't good for you. It's hard in the summer when all you want is a salad, but you can't eat it or you may throw up, get a bezoar, or bloat like you're pregnant (literally). It's hard to eat when your body doesn't feel like eating or gives you really bad symptoms; these can cause you to lose your appetite completely.
In my other post I talk about how to get your appetite back, I suggest you take a look if you're struggling with this.
3. Don't eat raw vegetables, fruits, or high fiber foods.
Raw vegetables are the worst thing you can put into your body right now. They are hard, cold, crunchy and do not digest easily. I remember for the first couple months of being sick, I was eating a lot of broccoli. Broccoli is a very gassy vegetable, as is any cruciferous veggie like cabbage, brussels sprouts or cauliflower. Do not eat them, they will make you worse.
Fruits, if raw, should be in smoothie form and be blended well. Make sure you don't have any seeds or peels! High-fiber foods are hard to break down, so you have to limit your fiber intake. I don't focus on this quite as much, but I don't eat things that advertise high fiber like cereals. If this is a problem for you, I would first cut the fiber you eat in half and see how you do. Remember, there is a difference between soluble and insoluble fiber, so be aware and do research.
4. Don't eat any seeds or nuts.
These don't break down and may not pass through your stomach, making them stuck in there and possibly forming a mass (bezoar). This includes the seeds in any fruits and vegetables that have them.
5. The emotional impact it will have on you.
Any form of disease is hard on someone. I have spent a long time crying about my pain, weight loss, how I feel, about having to go to work or school, etc. Even now I spend a lot of my time planning doctor appointments, acupuncture appointments, nutritionist appointments, etc., around my school and work schedules. It is stressful. I have found that gp has caused a great deal of anxiety that I am still dealing with daily. The doctors (at least mine) never told me how hard it could be, and I really think that is because they do not know. They don't know how bad our symptoms will get, and they don't know how much weight we'll lose or if we'll actually "starve for a cure" as the gp slogan says. They have no idea what we go through every day, so they don't know how to give us the correct advice. Most doctors will say support groups, but it goes well beyond that.
6. The physical impact it will have on you.
I have spent many days on the couch or bed not doing anything because I'll either be in pain or be so fatigued that I can't do anything. Thankfully acupuncture has helped me quite a bit, but every day I still feel like my fatigue level is significantly higher than the average 21 year old's. It's hard to see people hiking, but know that I would hardly make it halfway up a short trail. How much weight you lose in a short amount of time takes a really big toll on your body. At first you may like it, but you will soon start to hate it for how it makes you feel.
7. Your pregnancy will be different.
Though I do not have a child and I'm not pregnant, gp does affect you during and after pregnancy. Knowing this honestly scares me for when I am ready to have a child. Personally, I will research a lot more and will also wait until I'm in better gp-shape before having kids. Going through the few support groups I am apart of, I hear a lot of stories of how some their pregnancies were a complete nightmare the entire 9 months because of the pain and weight loss. For others, its the opposite: they feel normal for the whole 9 months, and then after their gp is 100 times worse than it was before. Either scenario is not pleasant. Be aware of both, and make sure you are healthy enough before hand.
8. Your bowels will change.
No one likes bowel troubles. Since fiber is hard to digest, a lot of people opt to hardly have any at all. Fiber helps your intestines move faster, as well as cleans your colon. It is essential to have fiber for a normal bowel movement. There is soluble and insoluble fiber: one puts water into the stool to soften it up, and the dissolves the water into a gel-like material, to bulk up the stool. One without the other will make you constipated or have diarrhea. People with gp need to have a balanced fiber diet but not too much of it at the same time.
9. Acupuncture can really help you.
See my other blog post about acupuncture. It is something I will always reference and something the doctors never will.
10. Don't eat late.
Eating late will not allow your stomach to digest before bed time. There were many times I would wake up in the middle of the night so nauseous that I thought I was dying. I would have to sit at the kitchen table, near the bathroom, with a blanket and a pillow and try to ignore how I was feeling until I fell back asleep. That exhausted me even more.
Now, I eat dinner at 5:30 every day. Sometimes I will extend it to 6/6:30 if we're out somewhere, but then I will stay up later that night. By eating at 5:30 and having nothing solid after, I help make my stomach digest enough so that around 10pm I can go to bed. Since doing this, I haven't woke up once in the middle of the night with nausea.
I hope this list will help some of you, especially the newly diagnosed or some of you that may be having stomach or bowel problems. Doctors are great, but when they hardly know anything about your disorder, talking to a naturopathic doctor or researching on your own/trying holistic solutions may be your best bet. If you have had a good experience with your doctor and they have warned you about what I listed, than that's great!
Let me know what was most surprising to you!
-Loreal
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