A New Diagnosis for Me…and Hope

Those who are more engaged in my blog will surely have noticed I have not been posting as often as I once did for quite some time. I haven’t been following through on answering emails nearly as well as I used to, either. I receive a lot of emails via my website, and I haven’t been keeping up for a while now.

I had not mentioned this online, but the truth is that I have been rather sick this past year after having some medical issues progressing for the past couple years. Lack of diagnoses piled on top of misdiagnoses have left me with increasing suffering, making it more and more difficult to keep up with this website.

I love our community, and I sincerely apologize to so many of you for each incident in which I failed to follow through answering emails. I enjoy hearing from every one of you. I have kept up with Crunchy Coaching requests, but little else regarding this website.

Being a mom to Bradley and providing for him had to come first as I’m sure you all will understand and support.

I have had an increasingly difficult time eating and drinking. I have had terrible abdominal bloating, pain, and nausea that has grown worse and worse. This past year, it all went over the cliff. I have spent many long nights on the bathroom floor crying for hours in agonizing, excruciating abdominal pain that could not be relieved, and I have lived through many days of sleep deprivation as a result.

I finally ended up in the hospital again in December. I could not eat or drink at all. I was in the emergency room shaking uncontrollably from such excruciating pain. There were concerns I had a bleeding ulcer, so an upper endoscopy was done after I was admitted.

The endoscopy showed that food I had eaten over 24 hours before was sitting in my stomach, undigested. Pieces of lettuce and tomato were clearly in view and recognizable. And everything changed. Sick Stomach

In the end, I was diagnosed with gastroparesis, and it turns out my case is rather severe.

Gastroparesis means stomach paralysis. Damage to the vagus nerve causes the muscles of the stomach to become paralyzed so the stomach cannot properly churn food to mix it with gastric juices and move the food forward. I have idiopathic gastroparesis, which means the doctors have no idea what caused this to happen to me. 1/3 of people living with gastroparesis are in the same boat. For whatever reason, my stomach just does not work anymore.

Idiopathic gastroparesis is slightly different in its symptoms than those with gastroparesis for known reasons such as diabetes. In most cases of gastroparesis, nausea and vomiting are the primary symptoms. With idiopathic gastroparesis, abdominal pain tends to be the primary complaint with nausea and vomiting being secondary. It explained a lot. 

In retrospect, I’m unsure why I did not put two and two together much earlier. I’ve had many episodes in which I have vomited food 10 or more hours after consuming it. Maybe TMI, but the food was not digested at all and was clearly recognizable each time.

In the spirit of transparency, I will admit this was difficult to accept. Through it all, I had never considered the possibility that I had a chronic condition that could not get better. I had assumed once the issue was finally identified, it would be treated, and I would get better. Or, maybe, it would just go away on its own and forever be a mystery as to what it was.

But, the reality is there is no cure for gastroparesis except in rare cases with a specific cause.

Finding a diet that is going to work for me has been challenging. I have only been able to consume pretty thin beverages. Solid food sets off a nightmare, hours-long episode of unbearable pain and nausea. I could eat some pureed food, but only specific foods (not particularly health promoting foods, either) at a specific consistency (very thin), and I could not get enough in to be adequately nourished each day. I lost 15 pounds in three weeks (fear not, I have extra pounds to spare!).

I was told to consider drinking Ensure™ if I couldn’t tolerate solid food anymore. Um, no.

On top of all of that, the very low fiber diet I was consuming was causing terrible constipation…not fun or helpful. It was helping my stomach, but not doing my colon any favors.

I have helped many families with a child with gastroparesis living with a feeding tube get off formula and onto a blenderized diet. But, there have been some families that I was unable to help. The smallest amount of any pureed food caused terrible pain and nausea. In these cases, I had to recommend continuing on formula and to try food again at a later time to see how it goes or turn to a j-tube and feed pureed food through the j-tube. It began to sink in that I might eventually be faced with the same options.

Brown pancakes from whole grain oats served with fresh bluberry and sliced strawberry on white background. Healthy dessertIf you have followed my blog for long, you know that I’m big into plant-based eating. A plant-based diet resolved a lot of issues relevant to chronic pain for me. It had also greatly helped Bradley (and it still is helping him). To be told to eat low fiber and to avoid fruits, vegetables, and whole grains, etc. was a horrifying proposition for me.

I was given a pamphlet with a suggested gastroparesis diet. It was loaded with sugar and almost void of fruits and vegetables. I threw it in the trash. I decided if it came to it, I would get a j-tube before I would eat this way. My stomach may have stopped working, but I still have a cardiovascular system, etc. to think about.

And then I got an idea.

85160707_500058144027824_8138800826480066560_nThere is a new product out in the enteral world called Whole Story Meals. I had gotten some to try with Bradley, so I had some on hand. Whole Story Meals consists of freeze dried, powdered food that you mix with a liquid, much like you would a powdered, synthetic formula. But, it is made of 100% real food. It has plenty of natural fiber, which my colon would certainly appreciate if I could manage to get it to move out of my stomach…and maybe, just maybe, I thought, I could tolerate it because when it is mixed with liquid, it is very thin.

So I tried it. I poured a cup of almond milk into a blender bottle, added 1 scoop of the powdered food, and I shook it up. I I drank it through a straw…because, you know, it’s more fun that way. And my stomach felt great. I did not have bloating. I had no pain. I had no nausea. It had been a long time since I had consumed food and been able to say that.

86262191_733090067098801_5760080490065297408_nSo, the next time, I tried 2 scoops in 8 ounces of almond milk. I was feeling hopeful upon seeing how thin the consistency was. And again, I felt absolutely great. I had found a way to consume foods I could not tolerate in solid or pureed form. I was eating fruits, vegetables, and whole grains without issue.

Even better, all that natural fiber meant I could finally say adios to the constipation. Sayonara, baby! I’m sure my gut microbiome is much happier, too.

Since then, I have been consuming 2 scoops of Whole Story Meals with almond milk for two of my meals each day. The rest has been homemade soy milk and some pureed, thin food to the degree I can tolerate.

And I’ve been doing much better. I’m not in terrible pain every day. The nausea is mostly in control. All while I’m consuming only real food without synthetic formulas. And now, I am wondering if a solution has been found for those living with gastroparesis who have been unable to tolerate pureed food through a g-tube.

Even for those who have been able to tolerate pureed food but were forced to use low fiber, less nutritious foods because the opposite simply wasn’t possible…maybe this is a way to change that. I am excited at the possibilities for these individuals and families.

I feel like I am getting my life back.

I packed up Bradley and I, and we took off to Cambodia for four months to rest and enjoy this beautiful country. The opportunity arose to do this, and I snatched it up.

We are resting and relaxing after a very difficult year. I am focusing heavily on spending quality time with him because he’s had to do without somewhat this past year. He’s only going to be a small child for a brief period of time, and I want to embrace as much of it as I can.

I am still adjusting to the idea that I can no longer go out and eat whatever food I wish and that my options will be rather limited now. Vegan nachos, one of my favorite foods, is something I won’t be able to have anymore, among many others. It sucks.

Shortly after I was discharged from the hospital, we had an unseasonably warm day, and I took Bradley to a small theme park called Santa’s Village. I had been feeling pretty down about all of this. We rode the Tilt-a-Whirl together, and as we spun around, I looked down and saw Bradley smiling and squealing in pure elation. My heart immediately was overflowing with joy.

I realized in that moment that, paralyzed stomach or not, there is a lot of happiness in my life and my life will still be very good. I have felt much better ever since.

I’m also getting more active on this website here again now that my digestive issues have greatly improved. I’m working on some books that have been waiting on the shelf for me to get to as well (guess what…a second edition of Stand for Food is coming soon with updated research and more! You will also soon see a book by me all about tube feeding and the gut microbiome!).

I’m doing better, and I’m still consuming a nutritious diet of whole food. I’m back. And I already have some posts planned that will be coming soon. I will also have my podcast up and going again as well…yep, I packed up my equipment and brought it here to Cambodia! I’m hopeful that I will be doing an incredible, very special series while in Cambodia with some special guests, but I’m still getting some things together to make sure it will work out. Definitely stay tuned.86282798_2570071346584574_2712204253228695552_n

*None of this is intended to promote one product over another on this website. In fact, as I write this, Bradley has two suitcases’ worth of Nourish, made by Functional Formularies, that we brought along because drinking one pouch each day has proved so important for his gut health and motility. This also made this trip possible for us.

**Also, I was not paid to write this article nor would I ever accept payment to write information on this website. You will always have honesty and transparency from me without financial motives. I truly am hopeful that many individuals and families living with feeding tubes who have not tolerated pureed food no matter what has been tried due to gastroparesis or other motility issues will have an option now that will work. And that was worth writing about.

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The view from our apartment in Cambodia.
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Angkor Wat
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Watching the many boats on the Tonle Sap river.
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Riding the ferry across the Tonle Sap river to reach the city of Phnom Penh.
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Reading mommy’s book, “So Many Plant Foods: Vegetables” which you can find on Amazon
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An ancient temple that has been overtaken by enormous trees.
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Rice farmers in the area visit these huts to take a break, relax, eat food, and listen to music.
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View from another window in our apartment.
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Enjoying the night view.
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Angkor Wat
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Bradley lost his first tooth while we were in Hong Kong!

5 thoughts on “A New Diagnosis for Me…and Hope”

  1. I am crying while reading this post. I will continue to pray for you and your family and send good thoughts your way. I hope you can enjoy your time and wish you all the very best health. Thank you so much for all the support, information, and care you give to so many of us!

    Like

  2. I am so sorry to hear of your health issues, Oh my you have been through a lot. I hope and pray things will be better for you. I so appreciate all you do for the tube feeders of the world. My best to you !! David

    Like

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