My GI Tract Will be Scoped

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I will also be looking at downsizing my huge tracts of land. I just tried on a 2x shirt I ordered and could barely get it over the girls. This is untenable.

Back to my GI appointment. I was a bit nervous because it was through the EDS clinic, and I met that awful doctor the first time, but these doctors were probably the best I have ever met. They had a fellowship student do the intake. She listened so carefully and asked such good questions. She really led the appointment and I didn’t feel like I had to explain myself or guess what may have happened to me. By this, I mean my guesses about my birth trauma are just suppositions. That’s when the pain started and it makes sense, but it’s really a guess.

I was examined, found to be full of gas, you can play my gut like a drum. The doctor came in, she confirmed everything and we went through the listing of about 6 scopes I will be going through. Timeline will be about six months. We will check my motility, scope up and down with a camera, I have to swallow rings and be xrayed the next day. Lots of things to check my motility. I won’t be enjoying those scopes, but I will like to poop more than once every 10 days.

Going to the EDS clinic is great, because there is an administrator there who is made out of sunshine. She is just the coolest person, and she talks with me and husband before our appointment AND takes care of stuff. I always feel like a real person again. I always look forward to seeing her. There is another woman who works there who used to work at my old pain clinic. I couldn’t recognize her face, but when I listened to her voice for a while, I realized it was because I always sent my husband up with my cards to register. I recognize her voice, but I didn’t see her much! I hope I see her soon to tell her! She’s sweet!

My husband does research, that’s his ‘thing’. So he looked up the lead doctor at the clinic. Not only is he handsome, he has a pretty darn good reputation for research. He may not have the reputation my pain clinic doctor has, but he has headed some large and important studies. He has the potential to be just amazing and well-known. My husband told me he is only 43. I am not comfortable with doctors being so much younger than me! (Not really)

I have sent letters to the patient relations department of the hospitals. One, being that my first appointment didn’t go well. I do not qualify for hEDS under the new qualifications, however it’s because I scored 4/9 on Beighton. Now this was January, and I told the doctor I could push further, I was in pain, but if he wanted to see something specific, please tell me. He was silent. The Patient relations person is amazing, and they aren’t taking away my diagnosis, but I am nervous. We are discussing. I can repeat the test fine during summer months, so we shall see.

The other letter is to the other hospital regarding the pain clinic and how I am not being heard. I am still in incredible pain. I’m not sleeping in any kind of pattern. 3 hours here, 2 there. I’m exhausted.

My husband and I have been discussing my presentation around doctors. I don’t know if I am doing something wrong or not. Am I not deferential enough? Too aggressive? I am running on pure adrenaline usually.

I have a whole new butt-load of medication to try. I know being more active will help, too. Sigh. I have also gained back 40 of the 120 I lost. I will cop to 15 lbs of that. When I eat oatmeal for breakfast and a couple of oatmeal bars for lunch, no dinner, how am I gaining weight? Besides not pooping? Honestly.

I also realized, I sound just like my grandmother. She was gassy, burpy, constipated, had awful heartburn, as well. I don’t know if she actually coughs up her food like I do. Gross. It’s like a cud. My grandmother had so much work on the farm and looking after grandpa, I don’t know if she actually had proper treatment.

That’s me up til now.

Will keep you updated if something fun happens.

Love to all.

🦓

 

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! 😘