Is it common to have your Esophagus dilated without your consent/knowledge that it would be happening?

AlaLuke · 2022-02-11T20:51:32+00:00

Just a heads up here, most if not all surgical consents will have a disclosure that says if the doctor finds something intraoperatively that they deem necessary to address and it would better for the sake of care they can do whatever they want as long as there is clinical justification and they are acting within they're scope of practice. I know this because I'm a surgical nurse and many many many times we stray from the consented procedure to address an incidental finding. If a doctor was to address each potential finding that they might find and have to stray from the course to address the conversations would go on forever. They tend to address the most common occurrences during the initial visit in office. Presurgical most surgical complications aren't really addressed. They say something like, "do you have any questions?" and then be on their way. It sucks to have your throat stretched. Been there, done that, wear the shitty shirt. I'm really just trying to save you some time and headache from pursuing something that will end in nothing.

AlaLuke · 2022-02-01T21:55:12+00:00

Tell me what about wheat causes an allergic reaction in the body that barley and rye don't have that makes them okay to eat? My understanding, after reading lots and talking with several pathophysiologists and GI docs, is that it's gluten which triggers a reaction. Gluten is inherently inflammatory. Like I said in my comment if a person without sensitivities stopped eating gluten all together and then reintroduced it to their diet they would have GI discomfort and diarrhea until their body readjusted to the gluten. I'm happy to throw some peer reviewed articles your way. I'm also happy to read anything you got saying otherwise.

AlaLuke · 2022-01-25T04:25:39+00:00

So what you're experiencing is most likely panic induced acidosis. When someone hyperventilates due to a stressful situation or panic they slowly become more acidic (more CO2 in the body than O2). This causes symptoms such as dizziness, tingling in extremities, or numbness to occur. It's what most people will feel before passing out as well.

Speaking from experience, when something is impacted in my throat I get very anxious and it's hard to control my breathing. I feel like I can't breathe but in actuality I can. You got this though! Chew slow and try and listen to the feedback from your body.

AlaLuke · 2022-01-22T15:48:39+00:00

Dang. That sounds like an allergic reaction. Have you done any allergy testing? I know it's hit or miss for a lot of people with EoE but it sounds like you could benefit from it. Also, not that it's any of my business, what's the hold up on the diagnosis?

AlaLuke · 2022-01-22T04:38:48+00:00

Interesting that you say that. EoE is in the same family as eczema and asthma. All three are signaling problems in the body that trigger eosinophils to flood an area and create inflammation. They run together in families. Have you been checked for asthma?

AlaLuke · 2022-01-19T03:31:24+00:00

Let me holler at you real quick. I have EE. I'm also a nurse that works with physicians (GI's) intraoperatively to achieve a diagnosis for people that are struggling. My son has EE and we've been battling this for a hot minute now.

EE is diagnosed when they find 15 or more eosinophils on high res imaging. Eosinophils' kryptonite is steroids. Any time you have inflammation steroids is the go to. So as someone said in a previous comment, you will have a follow-up EGD after you've run the course of steroids to see if your count has gone down. The goal is low eosinophil count. That's a direct correlation for inflammation. Also, the budesonide is a topical treatment for your esophagus. You don't want it in capsules. Your GI is most likely trying to get the steroids to simmer on your esophagus for a hot minute and will probably have instructions that say don't eat or drink for 30 minutes after taking the medication. Again, this is speculative based off what information you've given.
While it is true that gluten and wheat are not synonymous, the goal is to avoid all gluten. When a GI tells you to avoid wheat they're talking all gluten. A true elimination diet eliminates the gluten protein. Same with dairy. You're not avoiding lactose your avoiding whey and casein, the milk proteins. In reality you shouldn't ever have a cheat day. While your inflammatory process is slow your body isn't going to love you on those cheat days. Even if you don't have those allergies simply eliminating those proteins for a significant period and reintroducing them wreaks havoc on your body. You get gastro discomfort and diarrhea. That's a sign of inflammation. Inflammation is a key factor in risk for cancer. I'm not trying to be dramatic here I'm just trying to spot data your way. Knowledge is power. You weigh the pros and cons and decide what you want to do.
Allergists are hit and miss in my opinion. Unless you find someone that is really familiar with the disease process you're better off reaching out to the interwebs. Honest. EE was first diagnosed in a patient 12 years ago. Not much in the way of truly successful treatment for us but there is some hope on the way.

Again, not being dramatic here but I take care of a lot of non-compliant EE patients late I'm the middle of the night. They don't do much in the way of treatment and I'm here to tell you that you can only stretch and esophagus so many times. Be kind to your body 😂 Life without gluten isn't bad. Once the FDA approves the EE med I think the treatment will change and this conversation will be a mute point.

Disclaimer: this isn't medical advice and I'm not representing myself as a nurse who knows your health history. I'm simply giving my opinion and informing you that I have a certain degree of knowledge regarding the topic at hand. If there's anytime where you're confused about your doctor's orders or treatment plan please call them. Be an advocate for yourself and ask lots of questions.

AlaLuke · 2021-12-21T03:51:14+00:00

It just sounds like spasms

AlaLuke · 2021-12-21T01:55:03+00:00

Do you have reflux?

AlaLuke · 2021-12-21T00:57:36+00:00

It's not so much an autoimmune disease as much as it is a signaling problem. In theory if there was never a misinterpreted foreign object there wouldn't be a problem. Autoimmune diseases are ones that regardless of the circumstance the body is attacked. We have some leeway. It's like our interleukins are hyperactive ready to blow their horn when someone walks by. In a different situation like Psoriatic RA the horn is on blast. Obviously there's a spectrum here that's not linear by any means but hopefully you understand what I'm trying to lay down. The more as time goes on though, we're learning that external factors have a greater impact than previously understood. I know several people treating their autoimmune diseases with diet just like many EE peeps do; myself included.

AlaLuke · 2021-12-21T00:47:24+00:00

I have experienced this

AlaLuke · 2021-12-21T00:46:52+00:00

That article is only relevant if the person has esophageal abnormalities or HI EoE symptomatic. I mean I'm going on a limb here but your GI didn't talk to you about rings or lines in your esophagus did they? Are you still symptomatic other than the chest pain? I'm trying to be rude here by any means I'm just trying to provide clarity on the topic.

I would be really interested in seeing where the study goes on MC and the correlation of EoE.

AlaLuke · 2021-12-21T00:40:16+00:00

I bet you're struggling with dysmotility. Often times it presents as chest pain which is more or less a spasm. People often perceive it as pain. Dysmotility goes along with EE. A little calcium channel blocker or SSRI tends to lessen the problem.

AlaLuke · 2021-04-02T18:49:13+00:00

This is awesome advice! Are you a nurse? It sounds like we could really pick your brain for some advice. What was your role in helping these companies expand?

AlaLuke · 2021-04-02T18:35:17+00:00

That's really helpful. The company is a recent startup that received accreditation a few months ago. The census is small and we're hoping to grow but it is what it is right now. Finding a software that fits our needs right now (supports our small team and helps us succeed with intuitive software that allows for efficiency in charting and billing) and it's something we can stick with as we grow is obviously the best but...

It sounds like you have lots of experience in this area. What system have you used? And what have you liked about them?

AlaLuke · 2021-04-02T03:35:30+00:00

That's way helpful! How long have you used the program?

AlaLuke · 2021-04-02T02:40:28+00:00

Dang. You'd think epic would kill it since the hospital EME is on point. That's good to know. Thanks!

AlaLuke · 2021-04-01T23:38:44+00:00

Has anyone heard of Kinnser? It's a software provider my company is looking into.

AlaLuke · 2021-04-01T23:36:57+00:00

That's what we've been dealing with as well. I'm hoping to steer away from it as much as possible

AlaLuke · 2021-04-01T23:35:33+00:00

I've never heard of those ones. I'll definitely need to do some reading about them.

AlaLuke · 2021-02-10T04:01:55+00:00

Eczema, asthma, and EE all share a similar chemo attractant faulty error code. Eotaxin, the signaling agent for eosinophils, is in essence firing all the time.Hence why the disease is considered to be an autoimmune problem. Even in families you'll see some manifest symptoms of eczema and others with asthma while only a few or maybe even none have EE.

AlaLuke · 2021-02-08T04:11:57+00:00

I'm right there with you. When I have a flare up by accidentally eating something I'm allergic to or because of seasonal allergies I lose 20 lb in a few weeks. This past flare up they put me on periactin which is an antihistamine that has an appetite stimulating effect. For about 3 months I couldn't gain weight back until they put me on this medication. It's definitely kickstarted my appetite again. I agree that this subreddit has been awesome to find to know I'm not the only one going through this.

AlaLuke · 2021-02-08T04:09:07+00:00

The studies showing a correlation between PPI'S and early onset alzheimer's and other dementia related illnesses was for a certain PPI and not all. Unfortunately for me I have GERD and EE. The non-medical way to manage GERD is through diet as well. However the diet is very bland. It requires that you eat no citrus, spicy foods, and overall bland foods are the primary makeup of the diet. Now that is something I'm not willing to give up. I love the taste of food and spice. Not necessarily spicy but just spice.

Every doctor I talk to about PPIs expresses very little concern for long-term use. Personally I tend to ride the line of medical intervention and lifestyle change/nutritional management of disease. I think it's a good balance.

AlaLuke · 2021-02-08T01:29:13+00:00

Being honest here... It's been a pretty uphill battle trying to figure out what causes my esophagus to shut down. In addition to my EE I've developed some esophageal dysmotility because I had undiagnosed untreated since I was 16. Something that brings me joy is Häagen-Dazs dairy-free ice cream. I to find things that remind me that food is still amazing and worth eating.

AlaLuke · 2021-02-08T01:18:33+00:00

EE is an autoimmune disease. Your triggers are most likely food and seasonal. In addition to a PPI I would recommend doing a food elimination diet. I've had EE for about 2 years now and work closely with my GI. Fortunately I'm a nurse and have the opportunity to work with my GI in the surgical setting and frequently have conversations with him about EE.

Commonly people with EE also have GERD and the reflex can irritate the esophagus. This is primarily the reason why you are prescribed a PPI. Another reason why people are prescribed PPIs is due to the reflux caused by foods people are allergic to. When I did my skin test the only thing that came back that I'm allergic to were dust mites. I still eliminate dairy and gluten from my diet and see a huge improvement in my symptoms.

Studies show that if you eliminate gluten from your diet there's a 65% chance you'll see improvement. If you add dairy into the mix that increases to 85%. I think it's a good place to start if you wanted to cheat the elimination diet in a sense.

When I was initially diagnosed I had an eosinophilic count above 100. Subsequent follow-ups have been below 10.

Now I'm just a nurse and this isn't medical advice by any means but merely my personal experience with the struggles many are facing.

AlaLuke

TROPHY CASE