Gastroparesis Awareness

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Lovely, I was just reading a post on Twitter from the EDS Association reminding us it was Gastroparesis Awareness month. I replied I was pretty sure I had this, was awaiting diagnosis. Someone snarkily replied it was dangerous to diagnose yourself from the internet, and did I have tests scheduled. I replied I was trying, I had other priorities, which got, if you’re so sick, you should have your priorities in order. My retort was about needing my energy to bug my pain doc about my neurologist at the moment, but under normal circumstances, definitely.

It’s such a shame there are so many scammers out there we have to be suspicious of everyone. That really sucks.

I got partway into my makeup and just ran out of steam. I couldn’t go on. I’m dead. I hate using that analogy, but my lips are pale and I’m drained. I feel awful.

Anyway, back to gastroparesis. I have almost all the symptoms. It involves very slow digestion. I will eat at lunch, still be full at dinner. If you overeat, sometimes you vomit the remainder up. I am not doing this much anymore. I have a very small appetite, am constantly, well mostly, nauseated. My stomach is often bloated. Constipation, cramps, constant heartburn. I can’t think of much else.

My current diet consists of:

  • My morning coffee
  • Oatmeal for breakfast (the bad kind)
  • Homemade nachos with corn tortilla chips, melted lactose free cheese and low fat sour cream
  • glucose-fructose free iced tea
  • gluten free pizza
  • Chicken Tacos
  • Chicka Chicka Boom popcorn
  • Rice Crackers
  • Homemade hamburgers
  • Homemade hash browns
  • Chocolate (This is not necessarily FODMAP friendly)
  • Chocolate chip pancakes with syrup

 

  • I have been munching on lightly salted chips the past couple of days, as it quells the nausea. It worked during my pregnancies, my first one I lost 30 lbs! I was still 30 lbs heavier than now! 😮

This is all the food I would eat in a normal week. Other things we have in the house I can have are:

  • Lactose free ice cream
  • sorbet
  • Rice pasta with garlic and onion free sauce (gag)
  • Husband has a mini storeroom of chocolate in the basement, apparently.  For me.

I love my chocolate and popcorn, but I don’t miss my food. Since I started feeling better for the most part while on FODMAP, I don’t miss eating tons of things. I’m not often craving foods the way I used to, though I sometimes do get hungry. It takes a long time, though.

I hope I can get a gastroenterologist soon. I’m trying to think, and there just aren’t any other foods I eat. 🤔 Nope.

 

Adventures in FODMAP

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My adventure with the FODMAP eating plan really started in January in 2016. Well, that’s where it gets interesting, anyway. Technically, it would start at conception, when my genes decided I would have the stomach I have, but that’s reaching. I should mention in 2015 I had lost 40 lbs to go from 305 to 265. Let’s start in January of 2016

January/February 2016

I am having trouble swallowing. I find I have a bit of a ‘click’ in my throat, and food and medicine is beginning to stick. I visit my doctor, who refers me to an Ear, Nose, Throat Doctor (ENT). He is concerned, and books me for a barium swallow, at which they tack on a marshmallow test to test something else, but apparently this is significant.

The results came back indicating there were no issues with my throat per se,  but it was extremely damaged by acid, and I should see a gastroenterologist.

End of February: 250 lbs.

March/April 2016

Bloodwork needed to be done in order to see the gastroenterologist, so I did some with my GP, an found my B12 and white blood cells were high. Off to the Oncologist-Hematologist. After more tests and exams, which were painful, he said he may have to do a bone marrow biopsy, but no, thank goodness, he didn’t. He decided I just had a weird white blood cell count and took me off B12 supplements. Actually, all vitamins for a while.

For three weeks in April, I became violently ill. I was vomiting, had diarrhea, it was like day one of the flu for three solid weeks. I lost thirty pounds that month. I could barely eat. It was horrific. I was afraid I would die. I took Gravol continually. It was a nightmare. Eventually it subsided.

End of April: 220 lbs.

May/June 2016

The sharp stomach pain started in my lower abdomen and stomach. I was in constant pain and nausea. I ate what I could tolerate. What kept me going. The doctor made an appointment for an endoscopy with biopsy for the end of August.

End of June: 220 lbs.

July/August/September 2016

Feeling pretty awful but stable through July and August. I try to tell my doctor I can’t eat much and ask if it’s a problem. He tells me not to worry, I’ll get fat again as soon as they solve my stomach problems.  I have the biopsy. I swear I feel the snip.

End of September  215 lbs.

October 2016

My appointment to get my results in the October appointment were interesting. The gastroenterologist told me my stomach had an unusual texture. He asked about my life, I told him about how the pain keeps me mostly in my room. He told me that my life sounded pathetic, which made me cry. At that point he told me I needed to see a therapist because I was obviously depressed.

I’m not certain how the subject changed, but he asked me if I had problems with gas and bloating. As a matter of fact, I do! Much of it is because I eat too fast. I used to be teased for eating too slow, and eating hurts me, I’d rather not. The gastroenterologist then, almost as an afterthought, suggested I go see the Nutritionist across the hall and try the FODMAP eating plan and see if it works, just for a month, and then work to add foods back.

So I did. I made an appointment with her and my husband, as he does all the cooking and food shopping.

Why Don’t I Call it a Diet?

I suffered from eating disorders as a young woman, and I am nervous about the word. Also, I am not trying to lose weight, it is a plan for me, not a temporary measure. I need to be as serious about it as I should be.

 

What is FODMAP?

FODMAP is designed to help decrease your intake of fructose glucose, which, when you have slow motility like I do, will ferment in your intestines and create gas and bloating.

The best resource I’ve found for explanation has been at Diet vs. Disease.

 

From Diet vs Disease:

FODMAP described by co-creator Sue Shepard) stands for:

  • Fermentable– meaning they are broken down (fermented) by bacteria in the large bowel
  • Oligosaccharides– “oligo” means “few” and “saccharide” means sugar. These molecules are made up of individual sugars joined together in a chain
  • Disaccharides– “di” means two. This is a double sugar molecule
  • Monosaccharides– “mono” means single. This is a single sugar molecule
  • And Polyols– these are sugar alcohols (however, they don’t lead to intoxication!)

Let’s stick with the term FODMAPs shall we?

Those saccharides and polyols are short-chain carbohydrates that, if poorly digested, ferment in the lower part of your large intestine (bowel). This fermentation process draws in water and produces carbon dioxide, hydrogen, and/or methane gas that causes the intestine to stretch and expand.

The result is strong pain, bloating, visible abdominal distension and other related symptoms (1).

FODMAPS in the bowel

FODMAP Food Lists

Diet vs. Disease is an excellent resource. DietvsDisease.org

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I look at a wonderful chart like this and it makes me depressed. Great list, huh? Lots to eat, still! I’m allergic to much of it. I have anaphylaxis to peanuts, as does my husband, he is allergic to tree nuts, so we don’t keep them in the house. I am allergic to fish, paprika, beets, bananas, pork (but can have bacon, small mercies). I am not to have soy, as it is thought to aggravate endometriosis.

  • Because of the peanut allergy, I’m tangentially allergic to legumes and peas, they give me eczema when I eat them. They are off limits as per my allergist. Alcohol hurts my stomach. I’m not a huge drinker anyway, but I enjoy it occasionally.

There are many foods I do not like. Squash, raw tomatoes, oranges, turnip, most things with a strong taste.

So What Do You Eat?

Breakfast

  • Monday through Friday – Coffee with Lactose free milk and sugar with Dinosaur Egg Oatmeal
  • Saturday – Coffee with lactose free milk and sugar with two hash browns and six pieces of bacon, of which I get two. (My boy steals the rest, it’s a game)
  • Sunday – Coffee with lactose free milk and sugar with two homemade chocolate chip pancakes and light syrup, and two pieces of bacon. I munch on breakfast through the early afternoon.

Lunch

  • Monday through Friday – 1 oz of lactose free cheese on two crisp bread crackers
  • Saturday – Homemade nachos; 2 oz lactose free cheese melted on some plain tortilla chips, with 2 oz dairy free sour cream.
  • Sunday – Leisurely finishing breakfast

Dinner

  • Sunday – order gluten-free pizza. 2 slices (small)
  • Monday – 2 slices leftover pizza (small)
  • Tuesday – Homemade chicken fajita night with dairy free sour cream and corn tortillas (2 small fajitas)
  • Wednesday – Pasta night. I hate this new pasta and no garlic, so I eat my last two slices of pizza and my husband grumbles about making different meals for every person.
  • Thursday – 1/2 Turkey burger with bacon and Lactose free cheese .25 oz. I started to have this with a homemade bun, they were fabulous, but my husband would make the patties so darn thick, I can’t get my mouth around them, so he stopped the buns for a while.
  • Friday – Chicken Fajita night – Homemade and so yummy! I have 2 small ones.
  • Saturday – I have the other half of my turkey burger

UPDATE: My husband has informed me he does more than grumbles, he actually complains, and the burger I consume is beef. 😉

Snacks and Dessert

Dessert will happen 4 days out of seven, usually. I have a stash of sweets hanging around. They aren’t always the best for FODMAP, but sometimes the pain demands it.

  • Chapman’s ice cream lactose free in caramel ribbon
  • Fruit sorbet
  • Glutino double cream cookies
  • Glutino vanilla cream cookies
  • Panda licorice
  • A wee bit of chocolate

 

Results

I started FODMAP in October of 2016. I started to see results immediately when I slowed my eating. When I changed my eating, it took about three weeks. I noticed I started to feel better. In fact, I felt better than I had in a long time.

I spoke to the nutritionist and she was somewhat supportive. I had an appointment with her in November, and have been trying to make a follow-up appointment ever since. When I contacted her in December to ask for some guidance about sticking to the plan when I had to attend a function at a restaurant, she replied “try to stick to the plan”. Ever so helpful.

Current Status

As FODMAP is supposed to be temporary, I have been seeking guidance as to how to add foods back. I am still waiting for an appointment with the nutritionist, I will send her another email. The pain in my stomach is not subsided, but it is less acute than it was. I should go back to see the gastroenterologist,  but I’m not excited to. The stabbing pain in my stomach is kind of insistent.

I have experimented with the occasional pop here, and bit of garlic there, and had blindingly painful results. I nearly went to meet my maker (painwise) after a bout with orange chicken a couple of weeks ago, so I’ve become resolute.

Current weight: 207 lbs.

Conclusion

FODMAP has helped with many of my symptoms, and it wasn’t that big of change in my eating habits, except for going gluten and lactose free.  Once those substitutions were made, I felt many of my aches and pains diminish. Now only my intense pain remains. How long can I remain on this plan? That is up to time, my stomach, and my nutritionist to decide.

I would be pleased if I lost another 30 lbs, but I am not actively trying to do so, but the nausea I have daily often prevents me from taking in my daily goal of 800 kcals. This is a low number, I acknowledge, however, I continue to be bedridden and hope on more days than not to take in more like 1300 kcals. Should I have another month like I did last April, I think it’s wise to keep some extra meat on my bones. I still suffer from near-constant nausea, I don’t know if there is a solution for that.

 

Have a lovely day, Zebra friends! 😘

 

Friends!

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Yay! I have friends! I’m even wearing people clothes!

This past week has been a nightmare. That flu bug wiped me right out, and I am still feeling weak. Yet I am recovering faster than I have from other viruses, so I will take this! My daughter is still battling, she had to stay home from school, her headache was too intense.

My son is out for his first overnight trip! He’s out with the school. He has been bouncing off the walls all weekend. This will be so great for instilling his confidence. He’s a great kid. I’m just having trouble seeing my babies grow up. I had some insomnia over the weekend. I was the same way when his sister went.

If there is any confusion between the My/Our pronouns with the kids, there are just two kids, sometimes I remember to share credit, and sometimes I don’t. 😁

My good friend called me this morning, and we had a great chat, until I had to go, I suddenly started to feel awful again. But I had a nap, and if my surrogate little sister wasn’t coming to visit, I would probably still be napping!

My surrogate little sister is a good friend of my actual sister, and used to live with my family when she was a teen. I’m 14 years older than my sister, so I was long gone, but she’s an important part of the family. I haven’t seen her in at least ten years. She’s going to be surprised when she gets let in by my 5’9″ daughter who was knee-high last visit. 😅

I had to cancel my doctor’s appointment tomorrow at 1:00. I’m so annoyed. My husband can’t take me there, because he has to ‘work’ what kind of stupid excuse…( totally kidding ) No, he has to work, and the boss is out or something, and I can’t get there on my own because I’m so sore and weak right now. I have this awful pain in my abdomen that hurts when I sit up straight for more than a couple of minutes. Sometimes it twinges right away. I can’t seem to determine if it’s gynecological or gastrointestinal. We chased the gynecological theory for years, but my gastroenterologist was so dismissive and, frankly, rude, I’m not excited to try again. I mean, on FODMAP my inflammation issue is down, but the two spots of searing pain in my gut and my right lower abdomen are still present. The nausea has not gone away.

My friend has come and gone. We had such fun, and such a good chat. She lives an hour away, and is so kind to come visit me! She’s seeing her actual sister today, but had an extra couple of hours. I think we killed that and then some! Such good fun! I showed her part of my makeup collection. Silly bunny came to visit all made up! Who does that? I’ve actually resorted to storing my makeup in tubs. It’s just easier.

I love visiting, but I don’t love how tired it makes me, or how exhausted I get so quickly. I’m too young for this! I demand a recount!

We’ve made plans for next month. Visiting Bite Lip Lab, North America’s biggest Sephora is in Toronto, and lots more chatting. I have to rest up! Two venues? That is a tall order. I am excited to try!

It’s really nice being dressed. I feel so accomplished.

I haven’t been vaping the past few days, just using the marijuana oil at night. I’ve been worried about the vaping affecting my eye swelling flu thing, and been too nauseated to try, anyway. I’m hoping the pain in my back is ramping up only because of this, and not for some other fun reason. It is the most likely, however, hoof beats and all…

Hope my zebra pals had a peaceful day! 😘