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Why I Disappeared for Two Years–A Gastroparesis Tale

July 2014:

“She’s lost over twenty pounds since she was here in May.”

Worry in my doctors eyes.

“It could be cancer, it could be an autoimmune condition–we’ll know more when we get these tests back.”

Fear in my mother’s.

“I don’t think you’re going to be able to go back to school this semester.”

Tears of frustration in mine.

1 Month Previous:

Our health insurance provider did what they do best, that is screw up. The date by which the approval for my infusions expired came and went, and they hadn’t processed the renewal. Because of this I had to go about three weeks without an infusion. I caught a stomach bug–bacterial or viral we don’t know–but it was the worst I’ve ever had.

Once the worst (spewing vomit) was over I recovered pretty normally for a couple of days. Then I just stopped. I was weak. I was nauseous all the time. Eating was agony–hunger pangs were nothing in comparison. Being up made everything worse and I passed out a couple times. I kept expecting it to pass, but it just kept getting worse.

October 2014:

“Miss Macfarlane are you a diabetic?”

Uh no, no I am not.

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“The test showed your stomach is emptying too slowly.”

Gastroparesis? What the heck is that?

“It’s common in diabetics because high blood sugar damages the nerves controlling the stomach.”

Ok, but we’ve been over this. I’m not a diabetic.

“Sometimes similar nerve damage can occur from a GI infection.”

Hmmm you mean like the stomach bug from hell I had a couple months ago? That sounds about right.

January-February 2015:

My local GI doc was at a loss. The meds he’d tried me on had helped very little. I was still losing weight, I still couldn’t handle solid food, I was still miserable and sick, sick, sick. He decided to refer me to VCU.

My first appointment at VCU I met with the head of the GI department. He referred me to endocrinology and immunology at VCU as well. I had a consultation with a nutritionist–she was impressed with the shake my mom and I had come up with and didn’t have much to add. (For my gastroparesis shake recipe click here)

The GI said that if I was any other patient, he would put a J-tube (feeding tube that delivers stuff straight to the small intestine) in me right away, but because of my immunodeficiency he was afraid to–I’d be at high risk for a serious infection from it. We agreed that if things hadn’t improved in a month or so when I came back, we would try it anyways. I was desperate to stop losing weight–the more weight I lost, the sicker I became.

By the time my follow up came around I was doing a little better. The scale showed that I had managed to gain a pound. I felt like I had scaled Mt. Everest. It was the first time in nine months that I had not lost weight.

I met with a Nurse Practitioner in the GI department. She tweaked my meds, and was the first genius to think of giving me prescription anti-nausea pills. The changes she made worked. I started being able to eat solid food again in March 2015.

…..

It took me a few months to gain back about half the weight I had lost, which put me at a good, comfortable, healthy weight. The rest of it I still have not gained back as it was mostly muscle I had gained playing ball my freshman year at SVU.

Even once I had achieved my goal weight and was back on a fairly normal diet, my body didn’t bounce back to its former self like I’d hoped it would. It took me another year to get strong enough to go back to school. Even now, after two years with good control of the gastroparesis, I struggle–my body just isn’t the same. It probably won’t ever be, but that’s ok.

I’m learning it’s ok.

 

 

My Top Ten Tips for Tummy Troubles

Intestinal cramps, gas pain, constipation, diarrhea, nausea, indigestion, heart burn, bloating… The list of ways your digestive system can cause you discomfort goes on and on and on, and pretty much everybody suffers under an unhappy digestive system at one point or another. As one who has racked up some serious frequent flier miles at the GI’s office over the last few years, I have learned a lot of insider tricks that I wish I would have known from the start–they would have saved me some serious misery. So here’s to hoping I can at least help some of you when the occasional (or not so occasional) digestive woes hit.

  1. Ginger, Ginger, Ginger!
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Not that kind of ginger Ron, don’t worry

A couple of years ago I sustained some serious nerve damage in my digestive track from an infection that left me with “mild” gastroparesis and constant, crushing nausea amongst other things. I found ginger seriously helps with the nausea. Fresh ginger is best–I like to heat up water and put some cut up ginger in it. Let it soak, add a little honey and then sip til your tummy is happy again. Ginger Ale is also good, but make sure you get the kind with real ginger in it. You can also get ginger “candy”–I like Gin Gins Ginger Chews–but those are pretty spicy so I wouldn’t use them when your stomach  is seriously upset. They are awesome for motion sickness though. Really ginger is just all around a life saver when that sick feeling hits your stomach.

2. Peppermint Oil

Guess what else happens when you have nerve damage to your digestive track–cramps! Horrible, wrenching, gut-twisting cramps that leave you gasping in agony. Seriously, some of the worst pain I have ever experienced was from intestinal cramps. Luckily I eventually found peppermint oil, and we are very happy together. Nothing–no prescription or OTC meds–cut the cramps like peppermint oil does. It also helps with relieving gas, nausea and diarrhea. When I start getting that tugging feeling in my intestines I rub 3-5 drops of peppermint oil into my entire stomach area, moving my hand in a clockwise circle. Every essential oil I have ever bought says not to apply it directly to the skin, but to use a carrier like coconut oil–I have never not ignored that and so far I have lived. If you have super sensitive skin though, you might want to heed their warning and try it with a carrier oil first.

3. Probiotics 

This is an especially important one if you ever find yourself needing a course of antibiotics; before I learned about probiotics I would get really bad diarrhea whenever I was on antibiotics (which was almost constantly before I got diagnosed with PI). This is because antibiotics, in addition to killing the bad, infection-causing bacteria, wipe out the   good bacteria in your intestines. Probiotics help replenish these good bacteria so you can digest your food properly. Even outside of antibiotic use, probiotics are helpful for promoting proper digestion and boosting your immune system–70-80% of which is in your gut. I take a probiotic supplement everyday, and if I’m on antibiotics I double or triple my normal dose. Unfortunately probiotics can be pricey, but you don’t need the crazy expensive kind to see benefits–just be wary of super cheap supplements with a low cell count and only one type of organism. I stick with middle of the road supplements like Accuflora and Phillip’s Colon Health. Supplement this with probiotic rich Kefir and/or Kombucha and you’ll be on your way to a happy gut! Kefir probably wins out in functional probiotic content, but Kombucha has the added benefits of digestive enzymes. So I use a mix of both.  (My favorite Kombucha is GT’s btw).

4. Fennel Oil

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Fennel oil is great for relieving gas. Apply to the abdomen in the same way as the peppermint oil and fart away! You’ll feel so much better- let it go!

 

 

5. Yoga

Yoga can help digestion in a lot of ways, but I especially use it when I’m constipated, bloated or gassy. Type “yoga for digestion” into the youtube search bar and you’ll have tons of digestive friendly routines to choose from at a variety of difficulty levels. My go-to is Yoga with Adriene–she has several digestive/detox flows that help me every time! There are also some specific positions that can be utilized on their own to provide quick relief–like the figure-four stretch to relieve gas quick.

6. High-Calorie Shake for Gastroparesis and Gaining Weight

For my gastroparesis buddies or people who need to gain weight here’s my top-secret (not really) shake recipe that I survived on for eight months when my stomach couldn’t handle solid food:

  •  1 banana
  • 1 Ensure/Boost (high calorie kind)
  • 1 serving of favorite protein/nutrition powder (I like Orgain and VegaOne)
  • Several scoops of soy or coconut ice cream (or regular if you can tolerate it)
  • About a tablespoon of sunflower seed butter (could use peanut/almond butter)

Blend together and enjoy. Of course, I always used chocolate flavored everything, but you can use any flavor you like I suppose.

7. Apple Cider Vinegar

ACV is great for indigestion, heart burn and a sour stomach. It’s really important that you get the organic/all natural kind with the mother–it’s way more effective. The taste is pretty potent, so I always mix it (1-2 tablespoons of ACV) with a glass of water (heated), some lemon juice and a generous amount of honey. Sometimes I add fresh ginger for an extra kick of stomach-calming power.

8. Miralax

When you have to reach for a laxative, Miralax is your best bet. It’s not painful or habit forming like other laxatives because it doesn’t stimulate your colon to contract, it just draws water into it to make everything flow easier. A trick I’ve recently learned is that, especially if you’re like me and have to take Miralax on a regular basis, it’s best to take it at night. When I took it in the morning I had to take double the normal dose to make things flow normally that day; now I take a normal dose at night and things always run smoothly the next morning. So essentially you can half the dose you need when you take it at night, because it gives it more time to work. Also don’t pay for the name brand if there’s a generic–they’re the exact same thing but you pay extra for the “Miralax” on the bottle.

9. Allergy Friendly Foods I Love

ms-NX1khDWhether you have actual allergies or intolerances, eating the wrong foods can bring on a lot of bodily distress. I have a long list of foods that I avoid–some allergies, some intolerances. Here are some of my favorite allergy/sensitivity friendly items:

  • Enjoy Life Chocolate Chips: The only completely dairy and soy free chocolate I’ve been able to find (also gluten-free and nut-free)
  • Sneaky Chef No-Nut Butter: This stuff is seriously awesome. It tastes like a nut butter, but it’s made from golden peas! No nuts, soy, or seeds!
  • Luna Bars: If soy is a no-no for you then so are these, but they do have a couple totally nut free varieties (with 8 grams of protein)
  • Kind Breakfast Bars and Healthy Grains: Also have some totally nut free varieties that are also gluten and soy free.
  • Cheerios: Almost all types of Cheerios are now gluten-free! Mmmm tastes like childhood!
  • Annie’s GF Bunny Cookies: Gluten-free, not crazy high on the sugar or fat content, and delicious! These are my newest addiction.

10. Tummy Drops

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I saved the best for last. I first tried tummy drops a couple years ago and they’ve saved my tummy many a time. I always keep both ginger and peppermint tummy drops on hand–some at home, some in the book bag, some in the purse–wherever I go, they go with me. They were created by two doctors–one a GI specialist, one an avid cook–so they taste good, but more importantly THEY WORK. Ginger tummy drops are wonderful for nausea and motion sickness; they work better than anything short of prescription anti-nausea meds. The peppermint kind are powerful against intestinal cramps, urgency, bloating and a mildly upset stomach. They’re great as a tag-team with peppermint oil application or for when you’re in a situation where you can’t exactly lift up your shirt and start rubbing oil all over it. Sticking a drop in your mouth is a tad more discreet.

So there you go. My top ten tips for tummies are now yours to try!

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