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Recent diagnosis of Eosinophilic Esophagitis as an adult.

2 replies

Rishibyebye · 24/07/2024 13:10

After years of taking PPI for reflux the symptoms have recently gotten worse and an endoscopy has found a large hiatus hernia, concentric rings ( prob from acid damage) and Eosinophilic Esophagitis.

Am waiting to talk to the consultant on treatment and management plan but does anyone have this and how do you manage it?

OP posts:
Sadsadworld · 24/07/2024 13:14

Have you seen this?

www.bsaci.org/wp-content/uploads/2024/01/PIL-Eosinophilic-oesophagitis-2024.docx

EoEtroubles · 26/07/2024 20:53

Hi, this popped up in search as son currently having a flare up out of the blue (worryingly).

He's had reflux all his life and been on varying doses of a PPI for almost all of it. He had a couple of food blockages three or so years ago which baffled our local hospital (and the children's hospital to which he was transferred initially), but gastroenterology who saw him afterward immediately recognised EoE (much easier than typing the whole thing!)

He had an endoscopy which showed the rings (trachealisation), linear furrows and white patches, the three things they said they looked for. His eosinophil count from the biopsies was very very high. He was put on a very high dose of PPI (80 mg omeprazole a day) plus a steroid which dissolves in his throat twice a day.

18 months later he was scoped again and everything had disappeared (No furrows, trachealisation, white patches). Over the last year, we were told to steadily cut down the drugs so atm he is on 40mg omeprazole and 1 x steroid. However, he has suddenly had a flare up in the last 2 days, can barely eat or swallow, heartburn and chest pain. So I would say be very careful about how you cut down when it comes to that.

I feel incredibly unknowledgeable about it all. The treatment also feels very broadbrush as the NHS can't afford to keep scoping with every treatment change (or food elimination trial) so everything feels a bit hit and miss. Sorry to be a bit negative. Worried for him this evening. (He's 17 btw).

Also, he has no allergies that we have noticed, though his younger brother has (mild) eczema, bad hayfever and an allergy to tree nuts and legumes.

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