4.06.2014

There's no easy way out.


Last week I got a message from my doctor's nurse saying that she had something very important to talk to me about, and that I needed to call her back immediately. When I got a hold of her she asked me if I was still taking Reglan- the (only) medication that empties my stomach. When I told her I have been taking it it every so often she told me that my doctor just got back from a medical conference, and that he learned some "troubling" new information on the drug (there's already a ton of old, troubling info on it.) She said to stop taking it immediately and to talk to my doctor at my pre-op appointment next week.

I've been trying not to take it, and damn has it been hard. I can still take my nausea medicine, but there's a lot more to Gastroparesis than just nausea, and not being able to take Reglan means I'm not digesting much at all. I broke down and took it the other night after I had eaten way too much for dinner. My stomach was so distended that it looked like I was 8 months pregnant, which is uncomfortable and incredibly painful. Without the medication that's just something I have to deal with for hours, and hours on end.

Now that the only medication that helped me is off the table, I need to get more serious about trying to help my condition through my diet. GP isn't a disease, and no dietary changes will cure or heal it. The point of a GP-friendly diet is to try and eat foods that will be easily digested in order to help with the symptoms.

Right now my eating patterns are severely messed up. I try and go as long as possible without eating (and actually feel little hunger during the day) because eating makes me so miserable, and I get so hungry that I get nauseous and weak. At night I often end up binging, and that makes even more nauseous and miserable. I eat whatever sounds appetizing, which is usually something junky, and then I pay for it. I also consume a lot of sugar because it's easy to digest and if I end up burping up the taste of something sugary, it usually isn't completely disgusting. My doctor has recommended eating a few small meals throughout the day and that just makes me feel worse. It means there is ALWAYS food in my stomach and that is an awful feeling.

Lately I've been doing a lot of research into GP "friendly" diets, and it's been a huge downer. I have always been someone who loves to eat, and loves to eat whatever the heck I want. Obviously this condition has drastically changed my ability to do that, and it's something I'm still coming to terms with. I should also note that a GP friendly diet is NOT a healthy diet. The number one tenant of a GP friendly diet is LOW fiber and you know what has lots of fiber? Just about everything healthy. A low FODMAP diet is also recommended, and that list also includes a lot of foods that are very healthy for people without gastrointestinal diseases/ conditions. (I also have to follow specific dietary restrictions- avoiding anything containing tyramine- because I'm on an MAOI medication.)

The other day I cross-referenced all the different diets and came up with foods to avoid and foods to eat. Here is the list of foods to avoid:

All Dairy
Wheat/ Gluten
Rye/ Oats/ Kasha/ Barley/ Quinoa
Brown/ Wild Rice
Seeds
Nuts
All Soy Products
Lentils
Legumes/ Hummus
High Fructose Corn Syrup

Meats:
Sausage, Pepperoni, Salami
Steak

Fruits:
All Dried
All Raw
All Skins
All Citrus
Avacado
Apple/ Applesauce
Apricots
Dates
Canned Fuit
Cherries
Figs
Guava
Lychee
Mango
Nectarines
Pears
Papaya
Peaches
Plums
Prunes
Persimmon
Watermelon
Coconut (Coconut Milk/ Cream)

Veggies:
Artichoke
Asparagus
Beets
Leeks
Broccoli
Brussle Sprouts
Cabbage
Cauliflour
Fennel
Green Beans
Mushrooms
Okra
All Peas
Summer Squash
Onion

Other:
Coconut
Agave
Chutneys
Jams/ Jellies
Molasses
Pickles/ Relish
Artifical Sweetnesrs
Xylitol
Sauerkraut/ Kimchee
Soy Sauce (Fish Sauce)
Yeast Spreads (Marmite)

So what does that leave? Here is what I came up with as "safe" foods:

Meats*:
Beef
Chicken
Canned Tuna
Pork
Turkey

Fruits (Cooked - No Skins):
Bananas
Berries
Grapes
Kumquat
Mandarin Orange

Veggies (Cooked - No Skins):
Bamboo Shoots
Bell Peppers
Bok Choy
Cucumbers
Carrots
Celery
Eggplant
Pumpkin
Potatoes
Butternut/ Winter Squash
Yams
Tomatoes
Zucchini

Other:
Eggs
Almond/ Rice Milk
Creamy Peanut Butter
Certain Gluten Free Products
Certain Spices (If Tolerated)

*Some people recommend avoiding all meat but I'm not sure I could ever do that.

Out of all the foods on the recommended list, I currently eat just about none on a regular basis. Of course I eat almost all those meats, but usually in conjunction with something else I shouldn't be eating. Like sauce, breadcrumbs, or my favorite no-no, cheese.

Now, let me say here that I am incredibly thankful I can eat food at all. A lot of people with GP completely lose their ability to digest and have to live the rest of their lives on feeding tubes and IV nutrition. Right now I can eat just about anything, I just pay for it later. But even that is something that many other GP patients would kill for. In regards to this disease, I am currently one of the luckier ones. My fingers are crossed, but there are no guarantees for the future.

After a lot of thinking, I've decided that I need to give the recommended diet a try. It's not exactly healthy (I'll need vitamins), but it's healthier than what I'm currently eating (mostly sugar) and right now I'm desperate to feel better. To enjoy life again.

After my surgery I am going to go cold turkey onto this diet. N will have to take care of me for a week so I'm hoping that if I can come up with a mean plan, he can help me stick to it. If it makes me feel better I'm hoping that I can use it as an elimination diet, and then slowly add back in foods (like sweet, sweet gluten) to see if I can tolerate them or not after they've been out my system.

Do I want to do this? HELL NO. Thinking about giving up sugar makes me want to curl up in a ball, and thinking about giving up wheat and gluten makes me want to die. But I have to try something. Especially since the surgery I'm getting isn't going to help with my motility.
 
I'm still battling to come to grips with this condition and what it means for my life now, and my life in the future. It hasn't been easy, but it's something that I have no choice but to do. I guess we'll see where it goes from here.

5 comments:

  1. I stopped eating gluten about 2 years ago because of stomach problems - I started out upset, thinking it was going to be difficult, but feeling better is such a blessing. Plus there are so many good, creative GF recipes available online. Eliminating other foods on top of that will be challenging, but you can do it! Good luck!

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    1. I've heard a lot of people with stomach issues say that eliminating gluten has really helped them. The diet I've found says to avoid all grains, as well as coconut and other things often used in GF products, so I'm hoping that even if gluten ends up not agreeing with me, other grains do!

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  2. I can't imagine how frustrating this must be. Having to be so stressed about eating, something we do at least three times a day, must be SO hard. I wish you well on your diet! Making changes like this can be so hard at first, but I feel like you will adjust after a few weeks and be just fine. At least that's how it was when I gave up sweets a couple of years ago! I keep wanting to try again, but those detox weeks at the beginning are like drug withdrawals!

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    1. Thank you! The biggest dietary change I ever made was quitting Coke (the soda, haha) cold turkey a few years ago. I was straight addicted to it and drank multiple cans a day. I switched to water and black tea (and didn't lose one pound!) and haven't looked back. I'm hoping I can do the same thing with well, literally everything else I eat. I know that sweets especially need to go but man, those sugar withdrawals worry me! Hopefully it goes well!

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  3. Oh man, I am so sorry to hear that you've been struggling extra. How have the dietary changes been going?

    Jen
    Jen.amileamemory@gmail.com

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