Much to do about nothing

What can you do when you feel there’s nothing you can do?

Hope for the best?

Wait for something bad to happen?

Wait for nothing to happen?

The problem with EoE, in my experience, has alway been that it is reactive. By this, I mean that any treatment I’ve received has been in response to some form of food lodging for an extended period of time, usually over 24 hours. I’ve never received any preventative treatment until this summer when I received my diagnosis. I met my doctor who explained that he would be with me through this entire process and we are going to make a start at getting me healthy. I was given the highest dose of anti-acid medication my body could take and an inhaler, each, a six week supply. To find out if this medication worked I would need (another!) endoscope following a six week trial of the medicine. I was told was the medication duo doesn’t have a huge success rate as neither medication is used for what it is intended but it can be really effective for a lucky few. During the six weeks I noticed no difference so I’m unsure if I was to be included in that small bracket of the lucky few.

Unfortunately, the six weeks were up well over a month ago. I ran out of medicine and have heard nothing from the hospital or my doctor. I wouldn’t say I was looking forward to that endoscope, not at all, (anyone who has had one will understand why) but I really was hopeful that this was the beginning of the end. Well, as much as is possible with a chronic disease. I thought by the end of this year I would be coming away with a treatment plan to maintain and control something I have perceived to be a burden on my health and social life for the past 5/10 years.

So,

Where now?

I will have to try get in touch with the hospital and somehow meet my doctor again and, most likely, start over. However, the anti-acid medication is extremely nauseating leaving me unable to eat at regular mealtimes. I began to run into a horrible cycle of taking my medicine at the advised times then waiting hours before eating. This led to weight loss and a bout of fainting. But, I would absolutely choose this over the uncertainty of not know when my next holiday to A&E for a long weekend would be.

Where am I now?

I’m off my medication currently as my GP appointment wait is 4/5 weeks. With exams fast approaching I’ve learnt that stress seems to trigger episodes whereby every meal seems to be a battle. Each is painful and often slow. I feel embarrassed to eat around others as I don’t know whether I’ll need to sit for 10 minutes waiting to the food to eventually pass down or take a trip to hospital to eventually have it forced down.

This is an ever-present fear of mine, when will the next obstruction occur?

What if they can’t push it down?

Each is a scary thought. The first being inevitable in my current state of affairs. However, I can only hope it is far off in the distance as opposed to being tomorrow. So for now, it seems to be sit tight and wait…