And now I can't keep down fluids

I’m coming up on five years being feeding tube dependent. The beginning seemed impossible, and the changes that happened in my life as my family and I adjusted were scary and overwhelming. When your body loses abilities it used to have, life gets confusing and you start to fear losing everything; that was my experience, at least.

Because of my stomach failure, I have what’s called a J tube. It used to be a GJ, but regardless, I’ve always taken my feeds (my formula) into my jejunum. Your jejunum is a part of your small intestine, past your stomach, that absorbs nutrients. With my formula going into my jejunum, it leaves my stomach empty and grumbly all the time. Yes, I still get hungry- starving, actually. That’s the worst part of this whole thing. Fortunately, my stomach has been tolerable of clear liquids. If you don’t know much about a clear liquid diet, you can read more in this post. By drinking or “eating” clear liquids, i’ve been able to curb my appetite enough that I don’t go crazy. It doesn’t leave me without something to sip on at parties, and some drinks are like “treats” to me, that I would have on special occasions or when others are eating dessert.

I’m so sad to share that as of these last few weeks, it seems I no longer have that luxury. A glass of sprite at a restaurant puts me in sharp pain and sends me to the bathroom throwing up. Popsicles, water, they all do the same. I’m dehydrated in all the worst ways- nose bleeds, dry mouth, chapped lips, dizziness, headaches. My blood work is looking whacky because my body is so thirsty for water.

I’ll be starting hydration infusions in the coming weeks, going into the infusion center several times a week. This is tricky since I’m living in Blacksburg with Drew, and i’ll have to be going back and forth to Baltimore to go into Hopkins. Please pray for my parents, Drew & I as we navigate this new hectic arrangement and get into a rhythm of what life looks like in this new chapter. I always knew it would get worse, that this would progress, and i’m so sad, but trusting in the Lord’s plan for my life.

LOVE,

Jaime