I got phone calls from three of my doctors today. None of them realized the other two also called. It was a little funny.
One of the doctors told me they were scheduling an endoscopy and a colonoscopy to get a really thorough look at my GI tract. They will take biopsies from various parts and stain them to see if my mast cells are generally being terrible people (my money is on this) or if it is something else (I’m looking at you, eosinophils.) So there’s that.
Another one of my doctors said that in light of the swelling and my persistent bleeding, that I should stop eating solid foods and go on a liquid diet as a stop gap measure to try and stem the inflammation. I was not expecting to hear this today and I’m feeling pretty sorry for myself, which is not really my style, but is my right.
It got me thinking about the fact that I am pretty used to not eating at all (NPO), or to not eating solids, or to only consuming clear liquids. This is a side effect of being the vessel for a GI tract that feels it is my mortal enemy. Before my colostomy surgery, I didn’t eat anything but clear liquids for a few days, while at the same time taking impressive measures to clean the surgical area. And then I didn’t eat anything for several days after due to post-operative ileus (intestines not moving.)
So here are my tips for not eating solids or not eating anything but clear liquids.
Figure out which meds will make you hungry. I take high doses of antihistamines and daily steroids. These medications increase appetite. Steroids are actually used in elderly patients to stimulate appetite to keep up their energy. When I have to take my large doses of antihistamines and steroids, I drink at least 240ml of pureed food (squash soup is a mainstay in my house) or drink at least 500ml of clear liquid about thirty minutes before I take them. If you are on an NPO (nothing by mouth) order, I recommend starting bolus fluids about thirty minutes before you take your meds.
Set a schedule for liquids and keep it. Even if you third space like me and oral fluids won’t go to where they’re needed, they will make you feel fuller and suppress appetite. Keep in mind that suddenly consuming huge amounts of water when you don’t usually will skew your electrolytes, so be sure that you alternate with electrolyte solution. This is especially true if you have POTS.
Learn how your current dosing affects you without food. Medication is more available to your body the less solid food you are ingesting. The cultural touchstone most of us are familiar with is drinking alcohol on any empty stomach. If you drink on an empty stomach, you get drunker much faster because the alcohol is more available. Medication is the same way. If you eating thick liquids (pureed food, smoothies), the meds will be more available than if you are eating solid food. If you are drinking clear liquids, the meds will be more available than if you are eating pureed food. The difference in both efficacy and side effects can be dramatic. I recommend having someone with you for the first 48 hours or so until you can predict your reaction to meds.
Get something for nausea. Sometimes when you just stop eating, your body misinterprets the problem as there not being enough stomach acid, so it makes extra. This causes “sour belly” and makes you nauseous. Additionally, long term hunger will make you nauseous generally, so getting a script for Zofran is helpful.
It’s okay to add flavor. When I can only do clear liquids, I make flavor rich, brothy soups and then strain all the solids out. This way it tastes like chicken soup and not like broth, which really turns my stomach. Some people chew herbs and spit them out before drinking fluids so that it tastes better.
You are going to be more tired than usual until your body acclimates. Plan for it.
So when I am on no solid foods, my day generally looks like this:
630am: Wake up, drink coffee and take thyroid med on empty stomach.
700am: Drink morning milkshake of whatever I feel like milkshaking. Bemoan the lack of solids in the milkshake.
730am: Take morning meds, including antihistamines and steroids.
800am: 500ml of water.
900am: Cromolyn, 500ml of water.
1100am: 500ml of electrolyte solution.
1200n: Cromolyn, 500ml of water, antihistamines.
200p: 500 ml of electrolyte solution.
300p: Cromolyn, 500ml of water, antihistamines, steroids.
530p: 500ml of water.
700p: Cromolyn, 500ml of water.
1000p: Hook up overnight IV fluids (2L.)
1030p: Night time meds.
This is very generic and gets moved around because I often nap in the afternoon. I generally drink about 4L of water/electrolyte fluids a day when not eating solids and about 3L a day when I am eating solids. Not eating sucks, but being hungry all the time and not being able to eat sucks worse. This makes the hunger bearable.