Adventures in Not Eating

Every time I am admitted to the hospital with a flare-up the first thing they do is put me on NPO. NPO is a medical term for “Nothing By Mouth”, it’s translated from Latin. When I’m sick I could care less about eating, especially if I’m in pain. You need to let your bowels rest. Makes sense. As you get better you are slowly allowed to start eating.

My typical diet progression:

Disclaimer: Please do not use information from this post for guidance on your own diet. Consult your doctor or nutritionist first.

When I was suffering from my reoccurring abscesses I was not allowed to eat at first until the abscess cleared. During my last hospital admission when my doctor thought that a leak from my small bowels could be causing the abscesses it was decided the best way forward was for me to stay on clear liquids. I can remember every time I’ve prepped for a colonoscopy and struggling through ONE day of clear liquids and here I was facing an uncertain amount of time with no solid foods.

There is very little, if any, nutritional gains from a clear liquid diet. Therefore you have to get your nutrition via a daily infusion. This is called TPN, which stands for Total Parental Nutrition. You must have a central line (PICC line or Tunnel Catheter Port work the best outpatient) to receive this infusion and it supplements everything you aren’t getting from food. In the hospital, my TPN was infused over 24 hours/day along with Lipids for 12 hours/day three times a week. We weaned me down to 14 hours/day for the TPN in order to mostly have to deal with the infusions at night and not be tethered all day.

A Home Health Nurse came to set up my first infusion and show me how it worked and a pharmacy delivers a weekly supply of TPN and everything I need (saline flushes, syringes, alcohol swabs, dressing changes, etc.). Kevin learned how to set up my nightly infusions and has been the ultimate caregiver throughout all of this.

Going home with TPN infusions and a clear liquid diet was very difficult. On the one hand, I got to go home, and on the other hand, I could only have broth and jello. Each day I was getting better and that meant my appetite was coming back stronger and stronger each day.

Luna was very curious about my TPN

I didn’t realize how much of life revolves around food, we don’t even think about it. Whenever family is in town we start planning where we are going to meet for dinner or lunch. Every day we talk about what’s for dinner and what are you packing for lunch? It was depressing. Sometimes it is difficult to see the bigger picture. Also, I was still on medical leave so had all this time on my hands and I couldn’t fill any of it with food.

Nope, that’s not an iPhone charger, just a lipids infusion.

You know how when you’re hungry you open your pantry or fridge and have choices? Imagine your fridge has only two things, broth and jello. That’s it! My mother-in-law and Kevin were constantly on the lookout for different broths and jello to try and “spice” up my menu. I did find a broth that managed to “fill” me a little bit, that was Egg Drop Soup, minus the egg. It was good.

I’m pretty sure there were days when I cried because everything was just so overwhelming and even though I was home it always felt as if the road ahead was never-ending, which in a way is sort of true. It took a few weeks to begin a new treatment and my doctor said once I had a few infusions we could discuss changing my diet.

At the same time as starting my new treatment, I began a clinical trial for another medication. Overall I would benefit from this drug, but the trial is to see if it can close my fistula, which I haven’t gone into detail about yet, but will soon. A lot has happened over the last few months. The doctor overseeing this trial is a surgeon who specializes in nutrition, so he took over my TPN management and diet decisions. About two weeks ago he told me I could begin the BRAT diet which was very exciting to hear. It’s basically bread, rice, applesauce, and tea. I love bread and rice and I couldn’t stop smiling. I would cook my rice in broth (I have stockpiles of it) and then pour a little of my Egg-Free Egg Drop Soup over the rice and it was delicious. It was recommended to add one food a day. First I had toast, then the next day I had rice. It’s the best way in case something upsets your stomach you can easily figure out what food caused it.

No big deal, just running some early morning errands while my TPN infusion was finishing up.

A week later my doctor told me I could add a few more things to my diet like eggs and chicken!! I nearly fell out of my chair. Here I am, almost a week later and in a few days I will be bumped up to the Short Bowel Diet. I already feel like I have so many choices of things to eat instead of just broth and broth and broth. I’m still limited to what I can eat, but I can still go out and find chicken and rice or something I can eat. I’m slowly getting my normal diet back.

I’ve needed extra hugs during this time, puppy hugs are even better. 

As my diet progresses and weight goes back up, my TPN is being weaned off. Since last week I went from a 2000mL nightly infusion to 1600mL nightly infusion. As my diet becomes more and more normal my TPN will continue to be lowered until I no longer need it all. This will only happen as long as I have no issues (I’m looking at you abscesses).

I will continue to update this post until my diet is back to normal and I’m completely off TPN. Stay tuned.

I’m coming for you food! Soon!