No More Food!

This weekend was one of the most challenging times of my life. Friday and Saturday I experienced the worst allergic reactions to date! The swelling increased significantly in my throat, which has already been swollen for weeks. The swelling continued in my upper lip, tongue, and soft roof of the mouth. My uvula, the “punching bag”,  was laying down on the back of my tongue and would gag me.  I felt sharp sensations like an electrical shock in my throat. Everything was so painful as if the tissue was being stretched beyond its limits. Breathing was extremely difficult and medication did not seem to be working. Honestly,  I was not sure I would make it this time. All of this came after eating my lone food, rice. It was clear I had now lost my ability to eat food.

Sunday, I did not eat and as the day went on I began to feel a bit better. I was hungry but knew what would happen if I dared to take a bite. Monday morning, began with a call to my Dr with a report. We had called over the weekend for instructions but now to fill him in on the results. We all suspected this may happen, as it was eerily similar to what we experienced six years earlier. He confirmed, if I was reacting to rice I would react to all other foods. He has done tons of research on foods and their effects on mast cells. My plain, organic, made only with bottled water, rice was statistically the least reactive food for me in my current condition. I would need a feeding tube and an elemental diet.

The task of insurance approval and getting on the schedule provided a flurry of activity and the news was not good. The surgery schedule was full for the next couple of weeks. I would likely need to receive some nutrients before then. The questions filled my mind, how long could a person go with out eating? I had already lost 30 pounds over the last couple of weeks while I was eating. How quick would my weight loss be with no food at all? I once again called on my Prayer Army. With in two hours I received a call from the office. When I picked up the phone, the very first words out of receiver were “How hard were you praying?”  You have no idea, I replied! I literally have an army praying. “It has worked, I was able to get everything set for Wednesday first appointment of the day” What an answer to prayer and frankly a miracle. Wednesday, would be my 4th day with no food but it was waaaaaayyyyy better than two weeks and 4 days!

There are many reasons why people need feeding tubes. Sometimes a person has an ongoing problem where they are too sick to eat, can not swallow like after a stroke, can not digest food properly, or in my case, unable to eat regular food. When you have a feeding tube, your new food is a special liquid food mixture containing protein, carbohydrates (sugar), fats, vitamins and minerals called enteral food. There are two types longer term feeding tubes G tubes and J tubes (sometimes called GJ).  G tubes feed into the stomach.  J tubes are longer and feed into the intestines or jejunum. I will be receiving a “G tube”, placed during an upper endoscopy or scope. Almost everyone starts off with a G tube and that is what I will receive. In the days following my procedure, I will test the enteral food in my G tube but may need a J tube since my number of mast cells in my stomach are high. If I react to the enteral food, a J tube will be placed by passing the stomach all together. Although I am not thrilled with needing a tube to be able to receive nutrition, it will allow me to receive nutrition while I am going through this health crisis. A feeding tube does not mean I will need it forever but it will allow my hypersensitive immune system a chance to calm down for several months. With out the tube I would not be able to go that long without food.

And my God will meet all your needs according to the riches of his glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen. Phil 4.18-19

 image available at: http://pedsurg.ucsf.edu/conditions–procedures/gastrostomy-tubes.aspx

jejunal feeding tube

image available at: http://www.fairview.org/healthlibrary/Article/89301