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Boy Did I Throw The Hospital For A Loop!

sarahdea

By sarahdea
in Coping with Celiac Disease

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sarahdea Rookie
sarahdea
Posted

I had a hysterectomy yesterday. And while my OBGYN knows what celiac/ncgi is and understands the relationship to dairy, and is educated on the paleo diet, etc, etc...the nurses were totally thrown for a loop.

 

So here I am, post-op, having a terrible time with pain and having severe nausea from the anesthesia/pain meds, plus a migraine headache...and the nurses kept me on clear liquids cause they couldnt find anything to feed me. They kept trying to give me crackers for the nausea.  I tried to explain what gluten allergy was, and how it worked...the nurses listened, but I was really surprised at their ignorance. I mean, the amount of ppl that come through there, you'd think that they'd know something.  The poor ladies just had the deer-in-headlights look.

 

So the usual procedure for post op is clear liquids, to creamed liquids to solid food. But right now I am off dairy too (hopefully I can reintroduce eventually in small quantities) and they were just racking their brains as to what they could give me. I kind of felt sorry for them, they were compassionate and desired to help me, esp after I explained the GI symptoms I get which would be HORRIBLE after a hysterectomy,yikes!

 

Eventually the nurse gave me 2 jars of applesauce with my 600mg ibuprofen, then later a green salad and a hamburger patty and some cooked carrots and potatoes. But I was even afraid of the carrots/potatoes, who knows what's in the sauce!

 

Anyway, I was so greatful to my bf. I am home now and he has stocked his place with all kinds of fresh foods I can enjoy while I heal.  I think the nurses learned something from my casaae and will hopefully be more educated for the next celiac in their ward.  I'm just still REALLY surprised they were unaware.

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kareng Grand Master
kareng
Posted

I am never surprised.  When I had an elective procedure, I asked about pre-op meds or anything they would try to feed me in advance..  I brought my own dry cereal (Chex) and knew I could have the applesauce and sodas/juices.  I brought my own pain meds that I knew were gluten-free. I had them put the allergy wrist band on me. I talked to the nurses that would be with me post-op before I went into the surgery.   I actually drank a glass of water before I was really awake, so they could have tried to give me crackers.

cahill Collaborator
cahill
Posted

I had surgery to repair an abdominal hernia last summer . It was supposed to be a one day surgery.  I knew there may be a chance I would have to stay over night and though nothing of it ( I had planed on having my daughter bring me food from home)

 

Well the best laid plans    <_<  Things did not work out as planned and it was a dietary nightmare .  I ended up staying over night and because my surgeon ordered  a diabetic diet my daughter was not allow to bring me in anything to eat .

 

Long story short : the staff told me I had to eat something before I could leave . The ONLY thing and I do mean only thing on the menu even close to something I could even risk  eating  that they would allow me to order( because of the diabetic diet) was cream of rice . So I ordered it . The girl brought it and said" here is your cream of wheat"  . Seriously  I mean SERIOUSLY ,,, ,MY Chart said celiac right on it , I told the person that took my order I was celiac and they bring me CREAM OF WHEAT !!!!!!! They may just as well served me rat poison !!! I lost it !!!!!!!!!!! 

 

When the nursing staff was trying to calm me down the RN on duty all but snickered at me when I said I could not eat the eggs on the menu because they had gluten and probably  soy in them  ( powdered eggs because institutions  are not allowed to have raw eggs on the premises)

 

The Dietitian finally  came up to talk to me and offered to go to the store to buy me what ever I wanted . Not that easy .

 

She asked me what I eat at home so they could fix it for me . Not that easy .

 

The Dietitian even made a comment that a gluten free diet is among the toughest ( if not the toughest ) diet .

Really , no not really the toughest diet is gluten free  & soy free & potato free & ( well you get my point :P )

 

Finally my  surgeon    comes in to release  me ,  the nurses  and I fill him in on whats going on and   he writes an order so my daughter can bring me food from home . So I can go home . Easy

 

The think what surprised me  the most ( besides their complete ignorance    of celiacs ) is  I thought I was prepared . I had it all planned out . I did not realize there where " rules" that could prevent me from bringing  my  own food from home . Next time I ( if there is a next time) I will have an written order on admission to the hospital that my family is allowed to bring me food from home

 

 

I hope your surgery went well and I wish you a speedy recovery.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

When I had my endoscopy to confirm the Celiac I had already gone gluten-free - for only about 3 weeks.  So I'm in the recovery room and they offer me gluten-free cookies - which actually weren't half bad.  The nurse is chatting with me and asks me what my symptoms were before going gluten-free.  I told her I didn't have any symptoms, I had only requested the blood test because Celiac runs in my family and I was actually surprised when it came back positive.

 

Now mind you, the picture of the insides of my small intestine are at this moment lying on the table right next to me.  They clearly show visible inflammation.  In full color.  The doctor just got done telling me how she can tell just by looking at it that I have Celiac - she didn't even need to wait for the biopsy results to come back.

 

The nurse says... Oh!  You don't have any symptoms?!?  Then you can have something else... we have fig newtons - do you want a fig newton?

 

Really?

 

I told her no thank you - I've gone gluten-free so that I don't ever GET symptoms.  <_<

w8in4dave Community Regular
w8in4dave
Posted

OMG I don't ever want to go back to the hosp. after hearing all these stories! I went to see a dermatologist yesterday and I told him I have Celiac and am Corn intolerant and also Lactose intolerant. He said well you can eat what? About 3 things? LOL I said well it's not quite that bad but sometimes I feel that way. 

cahill Collaborator
cahill
Posted

When I had my endoscopy to confirm the Celiac I had already gone gluten-free - for only about 3 weeks.  So I'm in the recovery room and they offer me gluten-free cookies - which actually weren't half bad.  The nurse is chatting with me and asks me what my symptoms were before going gluten-free.  I told her I didn't have any symptoms, I had only requested the blood test because Celiac runs in my family and I was actually surprised when it came back positive.

 

Now mind you, the picture of the insides of my small intestine are at this moment lying on the table right next to me.  They clearly show visible inflammation.  In full color.  The doctor just got done telling me how she can tell just by looking at it that I have Celiac - she didn't even need to wait for the biopsy results to come back.

 

The nurse says... Oh!  You don't have any symptoms?!?  Then you can have something else... we have fig newtons - do you want a fig newton?

 

Really?

 

I told her no thank you - I've gone gluten-free so that I don't ever GET symptoms.  <_<

<_< amazing just amazing ,,, no wonder we ( sometimes) have such a hard time getting people to understand how medically serious  celiac and gluten intolerance can be. :( when the very people we count on to be knowledgeable   have not got a clue :ph34r:

flowerqueen Community Regular
flowerqueen
Posted

Words fail me. I'm so pleased you are at home now.  It's bad enough contending with a hysterectomy without the added complication of them not being able to find you anything you could eat.  I had my hysterectomy before I was gluten free and it was bad enough contending with a stomach full of stitches without having to find something gluten free.  When my daughter had oral surgery some years ago, she had a similar problem because she couldn't eat dairy. The nurses were so embarrassed, as we had pre-warned them she couldn't eat dairy and everything they suggested was either dairy or difficult to eat with her mouth full of stitches.  The nurses even looked in their own cupboards where they kept their meals and snacks whilst on duty and kept apologising for not being able to cater for her.  They sent the chef from the kitchen and even she hadn't grasped what was classed as dairy free, so how they would have coped with gluten free I shudder to think.  :(

 

Hope you are feeling on the road to recovery now you are out of hospital. Take care.

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gilligan Enthusiast
gilligan
Posted

I went through the same thing when I had surgery for a leg break.  They brought me a tray of clear liquids and my hubs told them to check for gluten.  They insisted it was ok.  Through my painful fog, I kept saying, "No!"  They brought me a popsicle, and hubs looked it up.  It was not gluten free, either.  I don't know who was more frustrated - me or the nurses!  Once I was able to eat solid food, the hospital dietician came to my room to talk with me, and meals weren't a problem.  I think it's a travesty that emergency room and hospital floor nurses aren't more versed in celiac disease.  Someone is eventually going to get very ill from their lack of knowledge.  I hope you're feeling better very soon!

Googles Community Regular
Googles
Posted

I'm so glad you are home now. That sounds like an awful experience. I am terrified of having to go to the hospital and being admitted at some point. I don't have anyone who lives near me who understands what it means to be gluten free. I have friends, but no significant other and I live alone. I better stay healthy and not end up in the hospital.

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