Gastroparesis Awareness

giphy

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

3oeduhgxuh8mirqlrg

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

low-fodmap-diet-food-list-for-shopping-colorful

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! 😘

 

The Bright Side

fb_img_1484150224546

Sarah’s Scribbles

 

There are a few upsides to being disabled. This being January, in Canada, one of them is having disability insurance and not having to go outside in January to earn enough money for food and shelter. In this much pain? I shudder to think about where I’d end up. Even just not having to walk outside is a blessing now, since it’s so icy. I was out just before Christmas  (and then the flu came to visit) and had an impromptu ‘Stars on Ice’ performance when trying to step up to our walk. My knee said “You’re so cute thinking this will happen,” and I tried to catch myself before I fell, and with a bit of fancy footwork, did not land in a snowbank!

Living in Canada is a blessing. With so many people in the United States in danger of losing their health care, having a genetic condition is dangerous. I’m privileged to live here. I have access to great research, good medications, adequate supply, assistance, transportation, entertainment, cleanliness, and so much more I wouldn’t have if I wasn’t in a large city in a first world country.

Being white is an asset. While I’ve had my share of ignorant comments, most doctors, nurses, and others, respect my pain and take me at my word. I’m not often called a drug seeker, and people don’t question my pain much, anymore. I mostly get pity, or people see me as brave.

Health insurance is so precious. Even though we have socialized medicine in Canada, employers sometimes provide extra insurance to cover dental, vision, medicine, and some therapy appointments, usually 10 of either physio, psychology, massage, or the like. I have coverage through my employer I’m on long term disability with, and my husband does, through his work. We are so blessed, because my medicine becomes so expensive. By February we’ve hit our $1,000.00 limit where the rest become free.

My loving family is something I can’t do without. My husband is utterly devoted,  as I am to him. I can’t get over some of the things we’ve been through! Some great stories! My daughter, a teen, tries. She is kind, but busy! My son is hanging out, checking food ingredients to see if I can eat things, if they comply with my food plan! My parents are good to me, but my dad is ill, and my mom is looking after him, you know how it goes. My sister and brother-in-law are teaching English in Beijing!

Husband has a good job. This means I can have some luxuries. A heated throw. A comfy onesie. Taking a cab to appointments instead of handi-transit, buying books instead of going to the library. Buying makeup as a hobby. Netflix. Cable.

They told me I would never have kids. This was before my EDS. This was just based on the endometriosis diagnosis. I had 5 surgeries to clear out nodules and adhesions, but my doctor doesn’t believe an hysterectomy will be the answer in my situation,  so here I sit. Anyway, it was 2001, six months before our wedding and the doctors were treating me for the aftermath of an ectopic pregnancy. They said,”there is no possibility of you conceiving, so try for six months, then we will start IVF.” they normally make you try for a year, so we were delighted. We would be starting IVF right after our October wedding.  Well, the next month I conceived, and I was first ever months pregnant at our wedding. Our daughter was born in February, our son followed in 2004.

There’s more, my extended family, my Facebook friends, my beloved Grandmother,  my real life friends, my doctors (sometimes), my favourite cousin, but I’m so tired!

So when people ask me how I can be so happy when I’m in so much pain, I consider all of the above. And I smile.