Out of the Hospital....and the fight for Gluten Freedom

[WestWalker]

Well, I can not seem to stay out of the hospital no matter what. This time I thought I had really glutened myself some how and had a massive acid explosion in my stomach. I felt like everything was shredded by glass from the neck down through my digestive system. I tried to keep from going to the Dr. of course but after three days I gave in knowing I wouldn't make it through the night and I wanted to do whatever I could to stay out of the hospital. So I went to the Doc and he saw me for 30 seconds and sent me to the emergency room. So then we began the battle to keep everything gluten free - as usual. Every new person that came in the room Dr. or nurse or whoever, I had to go over and over the gluten thing and watch them roll their eyes etc. In fact, we totally rejected taking one test because no one could determine if there was gluten in a bananna flavored barium drink for an x-ray type test. Nonetheless, with just the MRI I had a partially ruptured appendix and had to go into emergency surgery to have it removed and to be cleaned out to try an avoid any infection.

The surgery went fine and then every shift I had to retrain on the gluten thing. The next day, we sat down with the dietician, head nurse, and pharmacist to go over the gluten free things to try and get them to understand that be glutened actually sends me to the hospital and I am worse off than having a ruptured appendix. I had several friends that came and kept pounding on the point the gluten really makes me sick (somehow remember it's almost killed me a couple of times). So the hounding worked but I tried to be as nice as possible and win each new nurse or orderly over (you don't want them as an enemy!!!). Of course, I had to put up with the nurse saying, oh yes, this food is GF when the dietician frantically came up and took the tray away saying she was afraid she had killed me because the food was NOT GF and she had been absent when the tray was made. The pharmacists were arguing and arguing heatedly at the nurse's station about my med's because it was soo soo difficult for them to determine what was and what is not GF. That really limited the type of med's I got and most was given by IV because the pill forms where not GF.

Now my digestive system is really out of whack and I still have alot of pain that I shouldn't have. So who knows???? But I was able to function so much better this time than when I have been glutened and it has shut my entire body down. They tested for cancer too so I find out about that on Monday. We all have our own health challenges to get through and they tell me it was a good thing I didn't wait any longer to go to the Doc. But I hate the hospital soo soo much anymore!!! I sometimes would rather die than go. Well, I did get Harry Potter read while I was flat on my back in bed. And somehow the whole week in the hospital I never had a roommate and so it was basically a private room. And I did win over every nurse so that really helped. I'm positive I was their best patient all week. The only time I used the call button was when I was bleeding all over the floor -- that's not bad for a week.

Now I am hoping I don't have a heartattack when the bill comes!

[Eeyorific]

West,

Wow, how horrible. Thankfully the surgery went well. Take care and get plenty of rest.
_________________
Kristie M.

"The truth of God's love is not that he allows bad things to happen....
it's his promise that he will be there with us when they do!"

[Kimmus]

Hi West,
Glad to hear the surgery went well -- who'd have thunk it would be your appendix!?! I hope your other tests come back good as well and that you can get your body back on track and get rid of the pain. Pretty bad when it takes so much time to just recover from the hospital visit itself, let alone the surgery!
It sounds like you have some pretty awesome friends who looked out for you while you were there.
Take care, and heal fast!
_________________
Kim --
Mom of a celiac teen (GF BD Oct-04)

[cruelshoes]

Holy crap, Westwalker. What an ordeal. I am so glad you are on the mend. I had my appendix out when I was 10 so I know how much that can hurt.

Take it easy and get better!!!
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[nancw]

Glad you are on the mend, West. What a nightmare hospital experience...hope it's not repeated for you or any Celiac! I dread ever being admitted for just that reason, day surgery included.
Be well, and we'll keep our fingers crossed for a good outcome from your tests.
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

[aklap]

YEOW West! What an ordeal.

I hope you're on the mend now.

Thanks for the update.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Daughter_of_Light]

Get well!
_________________
Now faith is being sure of what you hope for and certain of what you do not see. -Hebrews 11:1

THE CAREBEARS WILL TAKE OVER THE WORLD WITH MACHINE GUNS!!!! TAKE COVER!!

Call me Light!

[Rachel]

Glad you're doing better! What a horrible deal you had to go through!

I can tell you that as a nurse that has worked on the floor (only a couple years ago) I had never once heard of a gluten free diet! They teach us about cardiac diets, low sodium, Diabetic diets, etc... but I never once heard of a patient on a gluten free diet when I was working on a floor in a hospital, and I'm sure most nurses haven't. This is really unfortunate and until more people, and health professional, become more aware of this I'm afraid this will take a long time to change..... hopefully I'm wrong! It's sad and so frustrating!

Glad you're on the mend and doing better!!

[WestWalker]

Thanks for all the nice well wishes. I did have a follow up and seems that they are going to remove pre-cancerous skin (headed toward being cancer soon it appears) which will leave a big hole and hopefully my skin will be elastic enough to cover the hole. I am not sure when that will happen since they have not called to schedule the out patient surgery yet. Oh just more fun....

I am finding that work really needs to be done at a legislative level concerning pharmacueticals. These companies don't seem to know what is really in their medications. Most do not certify the ingredients from their suppliers so they can not guarantee the med is GF. I think the National Celiac Foundation is working on this issue. I wish I knew how to support it because it has really impacted me a lot. I liked the pharmacists reply when I told him I need to make sure that there is no gluten in any of the prescribed medication, he said, "I don't know anything about gluten." And did not respond anymore when I was trying to explain how important it was.

[aklap]

West, it might help to print this out and give it to the pharmacists...


The Celiac Diet #5 - Medications and Celiac Disease - Tips From a Pharmacist
Practical Gastroenterology January 2007

by Steven Plogsted, Pharm.D, BCNSP, Clinical Pharmacist, Nutrition Support Service, Columbus Children’s Hospital, Clinical Assistant Professor of Pharmacy, Raabe College of Pharmacy, Ohio Northern University, Columbus, OH

http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/PlogstedArticle.pdf

[aklap]

[WestWalker]

Wow, thanks Al! The pharmicist phamplet is a great tool for me to have handy. Thanks alot for being our library of congress!

[aklap]