29
Jun

Eoe: the diagnosis

I've discussed Eosinophilic Esophagitis before, but last time around my reaction was admittedly a little strong. I hesitate to say that I overreacted, but only because I think that a new diagnosis is a legitimate reason to (briefly and within reason) lash out. Certainly beats keeping it bottled in, probably?

Since I last sat down to consider adding a new diagnosis to my "Lives With The Following Conditions" list, a few things have happened.

  • I saw my scope results on screen when I was at the hospital to see my elbow surgeon. The results, confirmed by two physicians at the lab, showed enough eosinophils in my esophagus to confirm a diagnosis of EoE.
  • After seeing these results I went and did my own research, since I still had about two months to go before my follow-up appointment with the gastroenterologist. It turns out that eosinophils are a type of white blood cell that comes out in response to inflammation or allergic triggers. Symptoms can range from almost nothing (like me) to severe (inability to swallow, allergic to proteins in almost every food, nutrients need to be provided through a feeding tube in the stomach).
  • When I saw the GI doc, I went armed with all of this information, as well as a healthy dose of fear that I would slowly develop symptoms as the condition worsened over months or years. I was ready to sit down and talk about how we identify my allergic triggers that are causing eosinophil flare-ups in my esophagus, then discuss how we plan to remove these triggers so we can halt the whole white-blood-cell-fest in my esophagus.

I was a little more than disappointed (shocked, maybe? almost outraged. Indignant? Probably all of the above) when my appointment was just over 4 minutes long and the doctor hardly wanted to discuss the EoE. He told me the scope results could confirm that I do not have celiac disease, but he wants to re-screen in 6 months to check for changes. He also handed me a diagnosis of Eosinophilic Esophagitis, told me he is not a specialist in it, refused to write me a referral for a specialist, and said his treatment plan is to "wait until I have symptoms, and if that happens, treat the symptoms with steroids."

Needless to say, I was not impressed. I (somewhat forcibly) suggested that allergy testing could help give me an idea of what is causing the high eosinophil count, so he reluctantly agreed to refer to an allergist. He was literally backing out of the room by around the 3.5-minute-mark, so getting him to hang around in the doorway long enough to agree to write that referral felt like a (very small) victory.

I later met with my family doctor to discuss how the GI appointment had unfolded. He and I agreed that we would see what the allergy testing revealed, and if there was a need for further consultation, he would write me a referral for a GI doctor who specializes in upper GI disorders.

After doing a bit more research and reading, as well as discussions online with others who are affected by EoE, I've come to the realization that I am not in bad shape. In fact, I think I'm much luckier than many others who suffer from EoE, as my diagnosis came early and before any symptoms had the chance to wreak havoc on my life (or my digestive system, or my esophagus...).

Soundtrack for this post (a little morose, but it's what's on my mind):

"These humans all suck; I'd rather be home feeling violent and lonely."

30
Jan

The need for space

Some days it feels like I just need everyone and everything to fuck off.

The painful tingling in my hand from pinched elbow nerves can fuck off.

Diabetes can fuck off.

Eosinophilic Esophagitis can fuck RIGHT off.

Yesterday was my endoscope appointment with the gastroenterologist. He took biopsies of my duodenum, proximal esophagus, and distal esophagus. Why biopsy the esophagus (twice!), you ask? Well, apparently because mine is "furrowed".

What in the world is a furrowed esophagus, you ask?

A furrowed esophagus is one that has abnormal lines or trenches in it. It is also a classic sign of eosinophilic esophagitis, an allergic response to food that causes symptoms pretty much only in the esophagus.

Symptoms are things like dysphagia/difficulty swallowing (I don't have that), persistant heartburn (don't have that either), and  esophageal food impaction (aka when food gets stuck in your esophagus and you need a doctor to use a tube to push it down to your stomach. I definitely don't have that).

Samples are being sent to a lab, and I follow up with the doctor in a few months to get those results. Both the intestinal biopsy (for celiac) and the esophageal biopsies (for EoE) need to be analyzed to confirm or disprove these conditions.

Today I am pissed. I an ANGRY. I want to lash out. I feel like hitting things and screaming, because WHAT THE FUCK.

I am making a great effort to stay quiet about this today. My friends and family have been nothing but patient with me, and I really don't want to push my luck by putting them through any more fits of yelling and crying.

Boyfriend was trying to be all supportive and helpful last night by telling me that "Yes, it sucks, but it's better that you know. It's always better to know these things."

So today? Boyfriend can fuck off too.

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