Information on my Chronic Disorder

I guess it’s about time to stop being so cryptic about “my disorder” and “certain challenges that I face.”  Here it is:  I have a disorder called, “Eosinophilic Esophagitis.”  (What in the world is that?!) Okay, I’ll tell you–and I’ll tell you with my story.  (This is taken from another note I posted on FB from a while back).

For as long as I can remember, allergic issues (psoriasis, asthma, and eczema) have been a part of my life.  As I grew older, I started having classic hay fever and seasonal allergies as well.  When I was a teenager, I started having horrible pains in my chest and a constant feeling of burning in my stomach and chest.  I went to the doctor who promptly told me it must be excess stomach acid, and basically to deal with it; I was told to drink milk whenever I had that burning sensation so the milk could help neutralize the acid.  I dealt with the issues like this until after I was married.  I noticed, however, that milk really was not helping, and in fact, that I always felt worse after I drank a glass.  I went to the doctor again, who diagnosed with me GERD (gastroesophageal reflux disease).  He prescribed a pill akin to Nexium and told me I would soon feel better.

I didn’t feel better.  In fact, after the birth of my 2nd child, things went further downhill.  Instead of just feeling the burning sensation, I started randomly vomiting, the pain in my chest and throat became unbearable as if I had strep throat all the way down my esophagus 24/7, and food started getting stuck in my throat if I didn’t chew it really really well.  I also started having trouble breathing almost every evening, especially after eating things like pasta with sauce and cheese, and I had a really hard time sleeping because i felt I couldn’t breath or because the pain was so bad.  I went back to the doctor who scheduled an endoscopy to see if the acid had caused damage to my esophagus that might need extra or different medication.

English: Endoscopic picture of multi-ring esop...

July 31st, 2007 was the day I got the official diagnosis.  The doctor told me that I had 30-40 rings down my esophagus which was indicative of Eosinohilic Esophagus, or EoE.  I had never heard of the disorder and truly had no idea what that meant for me and my family.  Whenever I had received a medical diagnosis before, I was promptly given instructions and usually some type of medication so I could feel better quickly. I soon realized, though, that with this being such a rare and unrecognized disorder, none of my doctors knew what to do with me.  I tried getting the rings “dilated,” I tried swallowing steroids, and I tried to just deal with it.  Finally, on a visit to my allergist’s office, I saw a poster up about an eosinophilic disorder support group and went the first time I was able to.  The mother of a daughter with one of these disorders was the head of the group and helped me locate doctors who knew a lot more about these disorders than any I had encountered and I got on my journey of really trying to figure this stuff out.

Now I feel I finally understand the basics of the disorder.  Eosinophils

English: Intermed. mag. Image: Eosinophilic es...

English: Intermed. mag. Image: Eosinophilic esophagitis – high mag.jpg (Photo credit: Wikipedia)

are white blood cells that normally come out to fight against parasites, but in a person with one of these EGID’s they come out to fight against food or other swallowed allergens and end up causing damage and pain wherever they come in large numbers through the digestive tract.

Treatments I have tried: Drinking a completely hypoallergenic formula mixed with a gatorade as my sole source of nutrition to try and get the inflammation down, adding foods back in and then getting an endoscopy to see when the eosinophils come back, swallowing steroids, various medications, and many combinations of these treatments.

English: milk is cool from olly claxton

Since that day, I have found out that both allergens in the air and food allergens contribute to my disorder, although I am still unsure as to exactly what is causing my issues.  I am currently “trialing” foods–adding one food back in at a time to see where I have reactions.  I know for sure that my eosinophils go up when I have milk products and peanuts and tree nuts, but I also know there are other things I haven’t figured out yet.  Since I trialed milk about a year and a half ago, I have also added stomach inflammation to the mix (instead of just my esophagus) and we are still trying to figure out why that is happening.

These disorders are hard to live with.  The hardest part for me is when I am following my treatment plan so well– not eating anything I shouldn’t, taking all my medications, etc.– and I then I still have a bad day with pain, nausea, food getting stuck. . . Emotionally, it is really hard to live with.  Then, on those days I think, “well, then why I am even sacrificing all of this stuff if I’m going to be in pain anyway”, then I go eat something like pizza (which is probably one of the worst things for me) and the next day, I can’t do anything at all because the pain is so much worse.  The road to feeling better with these disorders is full of ups and downs and twists and turns and sometimes can get very discouraging.

Here’s the kicker: After reading this, you may think that I have it hard.  However, I have actually a pretty mild form of an EGID.  These disorders are actually more common in children, and there are many, many children who cannot eat ANY NORMAL FOODS.  There are many who have to get all their nutrition from this amino-acid based formulas through feeding tubes.  There are many who get a birthday cake made of cardboard or ice because they can’t eat even an “allergen-free” cake.  I have met several of these kids and they are amazing and huge examples to me.

I am not writing this for sympathy or to sound pathetic–I am writing just so you can get to know me a little bit better and maybe, if you know someone with these symptoms, you might offer that they get checked.  Everyone has their trials, and this is just one of mine.  In a strange way, though, I am grateful for it.  I have seen many miracles and blessings because of this and have gained many new friends.

I am so grateful to everyone who continues to be such a support to me as I try to figure this stuff out.  And to all who have read this, if you hear or know of someone who has similar symptoms, please encourage them to get an endoscopy with biopsies to find out what is going on.  These disorders can take so long to diagnose, and if they’re not diagnosed, they can’t get treated.

Thanks for listening!

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10 thoughts on “Information on my Chronic Disorder

  1. I think it is awesome that you are writing about this disorder. I was not familiar with this one at all. My daughter has Barrett’s disease and has suffered a lot with many of your symptoms. She had surgery last year for this and is doing somewhat better. I think it is important to share these kinds of things so others can benifit from this information.
    Blessings to you!

    • Thank you, LeAnn, for the support. I, too, believe it is really important that we get information out there so people can be aware of possibilities. I have a great-aunt who suffers from Barrett’s disease, and I know how hard it can be. I’m glad that your daughter has found something that has helped!

  2. Wow. I haven’t ever heard of this condition before. I can’t even imagine how hard it must be to try to figure out “what’s for dinner”. Best wishes to figuring it all out.

  3. Oh, this is tough! What a challenge! I feel for you, and have some insight to your physical ailment, but first I’ll share some related thoughts inspired by this writing of yours…

    I find it interesting you state the very words Satan tempts us all with when we are striving to overcome something…

    โ€œwell, then why I am even sacrificing all of this stuff if Iโ€™m going to be in pain anywayโ€

    I have been reading about the importance of identifying the source of the thoughts in our minds; this thought which entered into your mind sounds exactly like one in which the adversary would desire to plant into your heart – to discourage you and cause you to give up, and thus be in even more pain later…

    All types of healing takes time – whether the healing be physical or spiritual or emotional. Sometimes when we repent of sins, for example, the pain from those sins still lingers for a time.

    When we are doing the right thing, and are still in pain, Satan will get in there and try to discourage us from continuing on the course of progression. But we must remember that when it takes time for damage to occur, it will likely take time for healing to take place as well. It IS challenging to endure to the end and say on the course of healing (especially in the beginning when the pain is so deep that we may not notice the first layers of healing taking place). But I like how your story shows that giving into this temptation to give up the fight “even though you would be in pain anyway” INCREASES the pain, perhaps even tenfold.

    When we are striving to repent or improve upon something it is so important that we not give in to the temptation to give up – simply because we are not improving quickly or are “still in pain.”

    This is a lesson I learned when I overcame eating disorders. At first, doing the right thing may actually make things seem worse. Sometimes we go through some type of healing crisis or withdrawal. It takes great courage and self control to stay the course. But with faith in Jesus Christ and commitment to endure the healing course to the end – healing can come so thoroughly that it can be as if the pain were never there.

    I know this is long. But these are the thoughts and feelings coming to my mind in response to this post and I feel so passionately that they are true that I desire to share them. ๐Ÿ™‚ I know it is off topic in a way and hope you don’t mind me expressing the lessons which come to my mind in relation to this (my mind gravitates towards symbolism and how truth can be applied to varying circumstances). I thank you for getting me to think and pray for you in your healing process…

    Now, in regards to your physical ailment. I am so sorry about your pain and discomfort!! Thankfully, I know a couple things which May help…

    Aloe Vera is an incredible healer. It will also help restore healthy PH if your body is acidic (which may be causing the painful erosion). I suggest starting out with one ounce to see how your body reacts to it, then increasing to 2 ounces several times a day if it agrees with you. It may just help you heal! ๐Ÿ™‚

    Another thing which could be causing your acid reflex is that your stomach may actually be in the wrong place (pushed up) and causing the stomach acid to leave the stomach and push up through the sphincter and into the esophagus. There are people trained to locate the stomach and by simple manipulation touching the outside of your body – move the stomach into place. There are even exercised you can do yourself which may move the stomach on your own. I had this happen to me and was prompted to call my sister. She taught me what was happening and some simple exercises I could do on my own to get my stomach in place. I’ll get back with you tomorrow with the exercises… I really hope this information helps you!!!

    Corine ๐Ÿ˜€

    PS. Best of luck and call on me if you have any questions or concerns!

  4. Hi Amy. ๐Ÿ™‚ I know the above comment is long – you can delete it if you want to. ๐Ÿ˜ฎ

    I have experienced very painful acid reflux all my life – but didn’t know it. I actually thought I was having digestive issues (as I was in a lot of pain after eating), AND heart pain (I was in a lot of pain during or after exercising – sometimes…). One week I was preparing to do my first triathlon but was in so much pain I couldn’t eat or exercise. It was awful! I prayed – a lot… Then came the inspiration to call my sister, and she suggested that my stomach might be pushed up, forcing acid into my esophagus and causing damage there. (By the way, this pain after eating went on for so many years that I think my raspy voice may be the result of acid damage to my throat.) Anyhow, she suggested I stand with my feet apart, bend my knees while resting my body weight on my heels, then bounce up and down in little bounces until I burped. I did it. It took a couple of minutes before I burped. Vola! I was able to exercise again without pain! If ever the acid came up again, I bounced again… It may take longer or more intense efforts for you if your stomach is inf act pushed up and in a tougher position to move – but it can be moved to where it should be! It may be good to have a nature-path look at you to feel your stomach and see if it is where it should be. I wanted to find some links to explain the exercise for you but haven’t been able to so I hope this explanation makes sense. I was also told to sleep on just one side (one side pushes the stomach up, the other brings it down – I THINK you sleep on the LEFT side to bring the stomach down; you might want to google GERT/Stomach down or talk to a Dr. who knows about this to be sure and for more information). I REALLY hope it is your stomach. What a great easy fix that would be! ๐Ÿ™‚ And it DOES happen. By small and simple means are great things brought to pass! ๐Ÿ™‚
    Good luck.
    Corine ๐Ÿ˜€

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