Saturday 1 October 2022

Life Down Wattle Lane v2 - Eosinophilic Esophagitis & Me

One of my ailments is Chronic Eosinophilic Esophagitis (EOE), which developed not long after my chemotherapy treatment back in 2009. Although my EOE,  wasn't properly diagnosed until about 2018 when I ended up in hospital to clear a blockage in my throat... which involved a 4 hour surgery and a follow up Gastrocopy a few weeks later.

Eosinophilic esophagitis is an allergic condition that happens in the esophagus. The esophagus becomes inflamed and does not contract properly. It can get narrowed and develop rings or abscesses.  The symptoms happen when your immune system makes white blood cells in reaction to an allergen. The white blood cells are called eosinophils.

The gastrocopy confirmed my diagnosis with the white rings visible. 

So what does it mean for me... well when I eat sometimes food gets stuck in my esophagus. I take small bites, chew well, eat and drink together, and when I swallow all seems well. But it will be on the 3rd or 4th bite/swallow that then I realize that the food is not passing through my esophagus and is backing up. Sometimes I can feel it passing slowly so I then know I need to be careful. Other times it is a complete surprise... and it will be typically a bitch when I am or was enjoying the meal. When the food backs up your body wants to instinctively regurgitate it... which you have little time to run to the toilet. Sometimes the regurgitation works other times it doesn't. When it doesn't you just have to remember not to panic... as you can still breathe.  My techniques to help remedy the situation include beating my chest, jumping up and down, trying to force it down with liquid, or fizzy, which often backfires literally. When you have a blockage in the esophagus you can try to push it through with liquid but it does feel like you are drowning. But when it doesn't work your body starts to regurgitate up the liquid that is trying to unsuccessfully pass. Funnily enough... if the blockage is well stuck, even if you are not drinking every 15 or so minutes you will vomit up your saliva that can't pass. When regurgitating I try to put as much force into it to try to bring up the food as well. If I am still experiencing a blockage then I try again. Trying to force more liquid through the esophagus. If after a few attempts and no success then its off to the emergency department. If it does eventually clear. then I take a few big drinks and then continue on with my dinner.

There is medication, but that hasn't helped me. The best thing that I have found is to reduce the amount of bread in my diet.

After taking ozemperole for about 3 years with no success,  and the feeling that my insides were rotting, and trying an inhaler technique but again with no success, it wasn't until I then tried food elimination that there was a break from my troubles. I was suggested to not eat dairy for a month. Well I love dairy so I thought I would just start with reducing my bread intake first. I already know I have allergies to hayfever and in particular rye grasses... so perhaps there is a link to wheat. Well all has gone well for the last 3 or so months.

Until today. I got caught on chicken today. 

Just when you start to relax and feel like you finally have it under control... it comes back with a vengeance.

After about 6 or so attempts at clearing my esophagus it eventually passed... but I am left with a very sore throat.

Now when I am having an issue with a blockage the stress caused sets of my Parkinson's. The shaking steps up a few gears. The whole experience is very draining and exhausting.

What really bugs me is when people suggest smaller bites, chew more, eat slowly... I do and I know how to eat! I have once even had a blockage from eating fried rice!

EOE... you can live with it, adapt to it, but it still gives me a bloody good fright every time it happens.

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