Eosinophilia Esophagitis

Phoebes · October 02, 2024, 05:30:27 PM

I've had some under the radar eating disordered thinking and eating patterns throughout life no doubt. I've gone through many phases of different forms of restriction, such as whole food vegan, 30 day green juice fasts, hgb, calorie restriction, and just obsessing over my weight and shape. No doubt stemming from NM's hyper focus on my weight and looks. I wish I had understood she was just jealous, but at the time, I took her words to heart and became highly self-conscious of my weight, looks and even mannerisms, all of which she constantly picked apart.

Anyhoo, now I have an autoimmune disorder, EoE. It has progressed and I'm going to the dr. For it again tomorrow. It's just constantly triggered. My stomachs is also messed up, and I can hardly eat anything without it inflaming and my stomach hurting. I've read the scary stuff about it where it is progressive and eventually will close up all the way..what?

I feel like this is just one more thing that goes along with CPTSD..anxiety, depression, isolation, being smeared and shunned, fatigue, insomnia and now this. I found out others at work have FMLa for this. I'm thinking of asking the dr. About this, because there are weeks when we have to go in at 7 a.m. which is very hard after nights of insomnia.

Blueberry · October 03, 2024, 10:27:17 AM

Phoebe. I'm sorry this developed on top of everything else.

Hope67 · October 03, 2024, 11:51:07 AM

Hi Phoebes,
I am so sorry to hear about your autoimmune disorder, on top of everything else. I hope that your appointment tomorrow goes well and you can get some help with it.

Hope

Phoebes · October 03, 2024, 01:39:34 PM

Thank you for the support, hope and blueberry! I'm glad the appointment is finally here. I spent some time writing down all of my concerns and coexisting conditions to see if he thinks they could be related. I hope it's just a bad flare up but I'll at least be glad to know something..

Lakelynn · October 05, 2024, 03:38:27 PM

Hi Phoebes,

I looked this condition up and immediately realized how incredibly painful it must be. As a person who has auto-immune disease, I can relate to the fear and discouragement.

Are there any useful thoughts on what you could or could not do? Living with chronic conditions depletes energy so quickly.

Chart · October 05, 2024, 04:52:59 PM

Quote from: Phoebes on October 02, 2024, 05:30:27 PMI feel like this is just one more thing that goes along with CPTSD..anxiety, depression, isolation, being smeared and shunned, fatigue, insomnia and now this.

Phoebes, for better or worse I think your intuition here is worth listening to. I'm currently reading Van der Kolk's "The Body Keeps the Score" and he makes a very solid case for trauma's physical manifestations. I've been incredibly lucky my whole life, but physical problems are finally catching up with me. And it's as if the more I become conscious of my Trauma the more my body mirrors these problems. My hope is nonetheless that healing will trickle down through the whole system. Regardless, mental healing is now a top top priority.
I hope your doctor's appointment goes well and you can get some relief.

Phoebes · October 06, 2024, 05:21:04 PM

Hi lakelynn and chart, thank you for your support and comments. I've read van der kolk's book as well, and it goes along with it. I've always been a healthy person in general but this has been building for many years.

Apparently at my last upper endoscopy 2 years ago I didn't realize or misunderstood that things were not good with it. I have taken meds before, but meds affect me strong, and I have a lot of anxiety about meds. I don't like side effects, and I feel like in general they are poison. That said, he said I'm just really flared up and my stomach discomfort is the EoE, because the point where the esophagus meets the stomach has the highest concentration of eosinophils. So, he kind of got on me for stopping the meds, saying that just dabbling in them causes a rebound effect. I told h8 I would take the tx strength pantoprozole daily (already know that will cause issues from messing up stomach acids, but what's worse?)

Then, he said if I become ready and willing there is a weekly injection I can give myself that will also help my eczema..so thinking about that. Physically, I am already feeling better after a few days but still sensitive to everything I eat..yuck.

My stomach almost feels like when you have a stomach ache from emotional upset. I wonder if that is part of what's going on, too.

Chart · October 07, 2024, 06:18:19 AM

I empathize Phoebes, sorry for your struggles, sounds tough. I'm like you with medications, just don't like the idea of strange chemicals coursing through my body.

Lakelynn · October 07, 2024, 04:54:43 PM

Phoebes,

You seem to have a bit more information, or at least shared it here. Discontinuing prescription drugs is one choice. It can be good in the long run, but not so hot in the short run. I"m not advocating, just telling what my experience has been.

Depending on what's happening in your life, fully understanding and processing medical news is tricky. Now that things are more clear, it's still tricky. With persistence, it can be tackled and eventually conquered (I think) I'm sorry you are feeling the pain and wish you soothing ways to deal with it.