Today I’m sharing with you an experience that I had as a person with food allergies in the emergency room. Well, what I thought was a proper emergency room (more on that below). I want to share this experience so we can all learn from it. This opened my eyes to some of the hurdles many of you face regularly, which is why I’ve also created a Hospital Go-Bag Checklist, an Emergency & Disaster Planning Checklist and Guide, and a Compounding Medication Guide.
I don’t want any of us to be in a situation like mine was where I wasn’t really ready to be there, and they certainly weren’t prepared to have me. If you have questions after reading this article, leave a comment below. I’d love to point you in the right direction.
In This Article:
- My Personal ER Story
- How I’m Feeling Now
- How to Eat Safely at Hospitals and Emergency Rooms When You Have Food Allergies
- Food Allergies and Medication: What’s Safe?
- Complex Cases and Emergency Room Visits
- How Do I Get Hospital Staff to Take My Allergies Seriously?
- What Should I Have Ready in Advance?
- What to do When There’s no Time to Compound Medication
I Usually Have a High Tolerance for Pain, or Eventually Pass Out
PAIN. That’s how this whole thing started and wow did I have an interesting Emergency Room (ER) visit recently. It started at 7am. I’d eaten a handful of food and taken a small sip of a beverage at about 6am, having been up since 3am, it was “breakfast” time. I continued to work for an hour, and then the first bit of pain settled in. At first, it was manageable and I continued to work for another hour.
Then, it was unbearable and all I could do was try to find a comfortable position. You see, something similar had happened six months prior, so I thought it was a repeat. However, there were several key differences between the two events, details you don’t need since this article is already a long one.
Vomiting Has Entered the Chat
By 9am, I was vomiting. That continued for hours (which is not good by the way), and the whole time, the pain was intensifying. In my world, on the pain scale, a 10 means you’d rather be dead. I was at least a 9.5, and hit 10 several times that day.
After four hours of intense, unbearable pain, I thought about calling 911, but I knew there was nothing they could do for me. Honestly, all I really wanted at that point was a pain pill. I knew it was possible to take one because I’d had one six months prior for something unrelated. Pain management was the only thing on my mind at that point.
Would an Ambulance be Safe For Me?
For most people, calling 911 means an ambulance would be dispatched. In my case, it’s a 50/50 toss up as to how safe it would be. 7 months ago, I’d say absolutely not. Now that things have changed some, maybe? Not sure.
However, if you live in our little 5 block neighborhood, when you call 911, you get the fire department. In fact, the fire department is two minutes from our house. They have a fully trained EMT staff and all the typical equipment. Should you need transportation, an ambulance is then dispatched.
I know all of this because they’ve been to our house twice in the past, and to other homes on the block.
Back to the Story
Around hour 5 of screaming pain, Kid Two jumped into action and got me to an urgent care clinic. Apparently, this was our first mistake. Urgent care isn’t much different than a regular clinic visit. I’ve now learned that for better, more advanced care, you need to go to an ER that’s attached to a proper hospital.
Intake took about two hours. I was in their waiting room, half screaming in pain, on the verge of vomiting and it took quite a while for them to see me. When they finally did, the pain had vanished. Yup. SEVEN hours of pain, only for it to stop ten minutes before my name was called.
I was taken to the back, and then we waited at least another hour before being properly seen by a doctor. She spent maybe five minutes with me. Took a stethoscope to my chest, looked at my stomach (didn’t even touch it, just looked), and prescribed OTC medication.
I was rather vocal about my allergies and what was in medication and she insisted that it would be OK. She told me they have a system where they type in what you’re allergic to, and the system won’t let them prescribe you something you can’t have.
Let me tell you: THE SYSTEM DOESN’T WORK. Now, I was not naïve enough to fill said prescription for items I know have corn. It would have been a waste of time. Just like the entire visit was.
Essentially, I was in extreme pain in a different location, then went back home. I will say this much though. The staff, most of them, were SUPER nice. The staff, all of them, were unprepared to handle someone with severe food allergies. Especially those outside of the top 8.
So that’s my ER story, and now, I’m going to tell you all of the pitfalls I saw, and how you can have a better experience. We’re also going to talk about how you can be proactive before an emergency even starts.
How I’m Feeling Now
A lot of people sent in their well wishes which I’m so grateful for. The days following the incident, I was exhausted. I also ended up going on a trip that was pre-planned to Las Vegas. It was HARD because I opted to go without food. I took water and salt only.
This was done because I didn’t know what had triggered the pain. I hadn’t eaten anything new, and there were no changes in environment either. I didn’t want to risk having another situation like that whilst also being confined to a vehicle.
Post-Vegas, things finally eased up. After about another 5 – 8 days or so, I was finally back to my baseline.
Why an Urgent Care Clinic Was Our First Mistake
I’ve now been told that urgent care is like going to the doctor’s office without an appointment. It’s safe to say that my experience was a reflection of that. Here are several reasons why the urgent care clinic wasn’t the right choice:
- Lack of Specialists on Hand
- They Didn’t Run Any Tests
- Small Facility with Limited Resources
I’ve been told by a good friend who really knows the medical system that given my symptoms, they absolutely should have drawn blood and run quite a few tests. I left the clinic not knowing what triggered the entire episode, and no clues as to where to start. Persistent pain and vomiting is a bad combination and it can indicate problems with several major organs (or anaphylaxis). The fact that this wasn’t taken seriously is a huge red flag.
Had we gone to an emergency room attached to a proper hospital, specialists from other departments could have been paged in to take a look. If you’ve read our story, you’ll know that this happened to me as a kid.
Whilst I’m not against a small facility, it does mean that they’re lacking in resources to help someone that’s presenting with a complex case. For broken bones, I think an urgent care clinic is a great choice.
An Emergency Room Can Be Dangerous For Those with Food Allergies and Contact Allergies
I had a lot of time to look around and think through how these facilities aren’t made for people with food allergies and contact allergies. Here are some of my observations on the hidden dangers of an emergency room.
Gloves Everywhere. If you have a corn or latex allergy, this could be a problem.
No Allergy Alert Bracelet. The urgent care clinic didn’t give me a wrist band that indicated in bold and red that I have an allergy. I’ve seen this at some hospitals, but apparently, this isn’t a universal practice.
Hand Sanitizer Galore. For those allergic to corn, wheat, and milk, this can pose a problem, depending on the brand. If you have a contact allergy, be prepared to wipe everything down if possible before touching it.
Gowns & Bedding Can be Problematic. For those who can’t tolerate most laundry detergents and cleaning solutions, this can be a problem. For me, I stayed in a wheel chair the entire time. I wasn’t willing to risk sitting on their bedding.
Answering Your Top Question: How Do I Eat Safely in a Hospital or Emergency Room
There are several steps you can take to eat safely at a hospital or ER. First, have a hospital go-bag or emergency go-bag always ready to go. I never assume any place I go can feed me safely, nor do I expect them to. The more complex your case, the more you MUST be ready to take care of yourself.
Be prepared to eat mega bland food. For some of you, you’ll be able to order something like a plain piece of baked chicken or fish. You might be able to ask for steamed rice, steamed vegetables, or fruit too.
If you’re in the latter situation, make sure you’ve given very strict instructions for the kitchen. If possible, ask to talk with someone from the kitchen staff so they can confirm they’ll be able to meet your needs.
What you don’t need is a reaction on top of whatever else is going on in the moment.
I will tell you this though, and I don’t say it to discourage, rather to empower. The safest meal you can eat in the hospital or ER is the one you made yourself. In other words, have emergency food in your handbag, in your car, by the front door ready to go, etc. Be prepared.
Be Prepared to Be Your Own Advocate
You need to be ready to speak up for yourself where both food and medicine are concerned. Alternatively, bring an advocate with you.
I’ve heard several stories where someone with an allergy was offered food they were clearly allergic to. Example: someone allergic to dairy was offered ice cream by the staff.
In my case, it was the medication. I was vocal about what I couldn’t have, and opted to decline to take anything on site for reasons you’re about to read.
Food Allergies and Medication: The System is Not Ready For Us
As I shared above, apparently there’s a system in place where a doctor types in what you’re allergic to, and the computer won’t allow them to order a medication that contains those allergens.
I can tell you from my first hand experience, their system doesn’t work.
On top of that, I asked if I could see the ingredients, and they said no. Not out of spite, but I was told there wasn’t a list of ingredients for me to review.
HOLD UP. WHAT?!
They don’t have a list of ingredients?! For something they want me to swallow? In the year 2022 that just seems absurd to me.
Each of us has a terrible decision to make: willingly take something that can harm us, or turn down something that could help us.
Now, there’s hope. What you CAN do is research the basics and things specific to your condition before you ever need an ER. You can absolutely call medication manufacturers to find out what ingredients are used and make a detailed list of what you can’t have, and could potentially have. This list should be in your medical binder that comes with you.
When you’re in the thick of things, assuming you don’t need the medication that moment (and it’s normal business hours) you can try to call the manufacturer on the spot. They are able to tell you who makes the medication they’d like you to take, just not what’s in it.
Key Reasons Why Their Medicine/Allergen System Doesn’t Work
First and foremost, it’s not ready for you if you’re allergic to corn. When I was there, the doctor entered corn along with other key major allergens that I have. The system said it was OK to prescribe me two medications that have corn derivative in them.
It appears their system doesn’t account for derivatives. Perhaps it’s not looking for inactive ingredients as well. Either way, corn was in both medications that their system indicated would be safe for me.
I doubt the system is checking for things like coatings, capsules, and colouring agents. If you’re allergic to any of those, their system might fail you too.
I want to say this though. This failure is not done maliciously or out of spite. It’s a lack of working knowledge somewhere in the system, and the fact that manufacturers (and whoever designed this system) aren’t held to a higher standard.
The solution at this point is two fold. One, we as the community need to continue to do our own research and be armed with accurate knowledge. Two, we need to work with these people. One (or a group) of us with extensive allergy knowledge needs to go to the top level and help them improve the system.
Within their system, each and every ingredient must be accounted for, and it needs to clearly state what it’s been derived from. This way, when a doctor enters your allergen, the system can do a thorough check.
Do They Respect Your Wishes if You Decline a Treatment?
In my experience, yes. They didn’t force me to do anything I didn’t want. They had offered me a pill (OTC) that I knew I couldn’t have, and I didn’t have safe food or water with me to take said pill anyway. The staff didn’t push when I declined. In fact, the very awesome nurse told me what they had on hand, based on my condition, would probably just make it all worse.
However, not everyone has this experience at a hospital or emergency room. I know several people with food allergies and complex conditions that have had the opposite experience. They’ve been told things like, “we can’t give you Y until you take X”, even though they didn’t want (or couldn’t have) X. In those cases, all you can do is continue to advocate for yourself. If they don’t respect your wishes, you have two choices. Comply (which I wouldn’t), or leave (that’s me). You could also try asking for a different doctor, however, I had one staff member share with me that sometimes it’s policy.
In some facilities, it’s the policy that you must take A and have it documented before they can give you B.
I want to give you this reminder though: you are in full control of your body. That’s the definition of freedom, which we have in this country. You have every right to say, ‘no thank you,’ to any form of treatment you don’t feel is safe for you, or if you don’t have confidence that it will work.
How Much Do You Tell Them When You Have a Complex Case?
So, a few things to consider. First, it depends on why you’re there. If you fell off a ladder and broke your toe, they’re not going to need your life story. They WILL need to know what kind of medications/ingredients you can’t have.
If you’re there because of something related to your ongoing health condition, tell them everything and let them decide what’s important in that moment. It’s better to over-share than to leave something critical out.
I know especially during intake, when I was in so much pain, I wasn’t able to really think straight and answer their questions well. In that moment, an allergy binder or medical binder would have helped quite a bit.
When I Go to the ER, They Never Listen! What Can I Do?
You have a few things you can do before getting to the ER. First, make sure you have a medical binder ready to go. Second, have someone in your life that can be your medical advocate. Having that support and backup on site can make a world of difference.
Next, scope out the ERs in your area. Talk to a hospital administrator and find out what they’re all about if you can. From there, you’ll have a better idea of which location is most likely to listen to you.
Finally, stand your ground. At the end of the day, we can do four things: go along with it, stand our ground, ask for a different doctor, or leave. Whilst I hope you never have to leave a hospital because they won’t listen, I hope you’re at least able to stand your ground.
Also, don’t forget to ask the WHY. As in, why are they pushing for something you’ve declined? If they say it’s policy, ask to see it in writing.
One thing I’ll add. Have an excellent relationship with your GP, or specific specialist. In hard times, you might be able to say something along the lines of “Please contact doctor XX, as they can better inform you as to why that won’t work”. Something along those lines. Sometimes doctors and nurses aren’t willing to listen to us because we don’t have any credentials… even though we’re the expert in our ongoing condition since we live it everyday.
Here’s the kicker though, there’s a really good chance that the person treating you in an emergency situation also doesn’t have the proper credentials to understand and manage your condition. You might get lucky and the staff member has food allergies (or their child does). Outside of that, those doctors are there for emergencies, and and won’t be a specialist in allergy, GI, etc. This is where being at a hospital emergency room can work to your advantage. They can page in a specialist from a different department to help.
How Do I Get Them to Take My Less-Common Allergies Seriously?
First, talk about it with the proper language, and very seriously. Don’t say something like, “oh, and I’m allergic to apples a little bit”. It sounds like an after-thought.
Instead, say “I have an anaphylaxis allergy to apples and all apple derivatives.”
A statement like that will get their attention. Ask the intake nurse to note the allergies in your file as well, so everyone knows. Make sure they see your medical ID bracelet, and ask for a wristband that says allergy.
Finally, make sure you have an allergy binder and medical binder ready. These can be amazing tools to have when you’re trying to work with someone who hasn’t treated you before, and who may be totally unprepared to help someone like us.
What Should I Have Ready in Advance? Food? Papers?
This is such a great question. At this point, I’m now a firm believer that we should all have a hospital go-bag or emergency go-bag ready to grab. Having these items on hand are what you’ll need in the moment to be well taken care of. It’s documents that communicate your condition and your needs.
I can’t stress this enough: Anyone with a restricted diet or food allergy should have emergency food ready to go. Think small and large emergencies, including a go-bag, and emergency food in your vehicle.
Whilst we can’t predict what’s going to happen in the future, we can at least try to be prepared for it.
What Do I Do When There Isn’t Time to Have a Medication Compounded?
This is going to be a tough situation. First, the work you do in advance could make all the difference when you need to go in for unexpected treatment. Your medical binder should have all the info on what you can and can’t have.
From there, it’s all calculated risk. It also depends on WHAT is going on at the moment. Can you function enough to call a manufacturer and hope for an answer? Can you wait out whatever is going on whilst your advocate calls on your behalf?
There will be so many variables in the moment that will determine what you should do. You also know your body best. What’s the reaction likely to be? Is that worth the gamble?
I can’t answer this question for you, as you’re the only one who has all of the information to make a wise decision. I will, however, encourage you to seek out the information before an emergency happens. This way, you’re armed with the details that will help you make a tough decision in the moment.
Where to Go From Here
I hope you found this information helpful. If you’re a RAISE Member, make sure you tap into the Hospital Go-Bag resource, the Emergency & Disaster Planning resource, and the Compounding Medication Guide. These are going to help you put together the items you’ll want to have should you need them.
If you’re a member of the free-from community and have medical connections, consider being that person who helps improve their allergen checking system. Also, if that is you, I’m more than happy to assist on that project.
If you still have questions after reading all of this, leave a comment below. I’d love to point you in the right direction.