EE and steroids

[Anonymous]

I can’t even remember how many times many of us, especially the “old timers” have suggested to mothers that their child should have an endoscopy to look for damage and for eosinophils.

Now, 9 years later i find myself with a case of eosinophilic esophagitis—-seems kind of ironic.

I was two months on high dose prevacid 30 mgs, twice a day–but when I saw my GI last, he felt like I wasn’t doing very well—so now I have to swallow steroids from an inhaler—It sure doesn’t seem like I am getting very much of A steroid dose from two pumps–and, I have to continue the high dose prevacid.

My GI tells me they didn’t even know about this condition 10 years ago—i knew about it 9 years ago from being on this site.

I mentioned to the GI that if i thought it would make me feel better, i’d be willing to go on an elemental formula–he looked at me and said, “you know about thatI told him I did–which is thanks, again, to being on this site.

I have learned a little more about EE from my GI—such as the fact that it can cause physical changes in your esophagus–which I have.

My GI feels my EE is secondary to the severe reflux that I have had for so many years. The plan right now is to get my esophagus in as good as condition as possible—and then have a fundoplication to eliminate the reflux.

Wish me luck in getting this condition under control–and thanks to everyone who has dealt with it for the info I have leaarned about it–before it became “my disease”.

[Anonymous]

Wow! Good luck getting it in control!

[hellbennt]

Christine (& Kim!)

So good to have you here! I learn so much and hopefully i’m helping others along the way…

[Anonymous]

Well, thought I’d fill you in a little more on my EE. I had to change from the inhaled steroid to a liquid steroid that is compounded. I’ve had thrush twice. I am already at a higher risk for getting thrush because of the hydrocortisone I have to take to treat the adrenal insufficiency caused by my hypopituitarism—so swallowing extra steroids just ups the odds that much more!!

The inside of my esophagus has physical changes. It has raised rings that circle it, and furrows that run up and down it—so the surface looks like a grid has been mapped out with a blade. The doctor does not know if these changes will be permanent or not.

I absolutely hate taking prevacid 2x daily–so I skip it some times–really shouldn’t do that. I was originally supposed to drink the steroid 2x daily, also—-and not swallow anything for 1/2 hour after taking it. It seems like I forget half the time and end up taking one of my pills. My doc said I could go to taking the steroid once a day. I rinse my mouth to try and avoid thrush.

My GI said something about running my case past some doctor to see what kind of success they have had with doing a fundo on someone who also has EE.

I seem to be having a little less trouble with swallowing things–hope that lasts!

The GI and I also talked about the fact that adrenal insufficiency can cause you to form more eosinophils. I’ve raised my hydrocortisone dosage up a little, which has made me feel better, but I have been learning that hypopituitarism is a whole new way of life. They can replace the things your pituitary doesn’t make anymore—but replacing it is not the same as your body producing it—especially when it comes to cortisol—managing that is the biggest challenge.

I think one of my little new grandbabies has reflux—she is about 2 months old and weighs 8lb 14 oz. I’m going to try and get my daughter-in-law to join this board—and try to get the baby up to our ped GI—he is one of the smartest doctors I have ever met.

[Author]

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