have you been on a special diet while in hospital?

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ivy6
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   Posted 5/19/2010 12:52 AM (GMT -7)   
Our local hospital has decided it could do a better job at catering for people with allergies, food sensitivities and special cultural needs, so is thinking about trying some new strategies to make their food more appealing and inclusive.

That got me thinking. We're experts in special diets, seeing as we all have safe foods and foods that make us ill, so I was wondering how well your hospitals cater to your special needs? If they do it well, how do they manage it? Do provide a special menu sheet for, say, a low residue diet, and provide several selections a meal for you to choose from, or do you find (as happens here) that you're limited to the same basic meal day after day, week after week....?

Do you get enough to eat if you're on a special diet, and enough variety? If you're not happy, are the kitchen staff receptive to your complaints and do they provide an alternative meal for you?


If it's all right, I'd prefer to limit discussion to allergies, sensitivities and "clinical"-level diets like low-residue, diabetes-friendly etc for the time being. Our local hospital is just starting out; I think if people started lobbying for SCD etc, the poor kitchen staff would have a collective heart attack.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Post Edited (ivy6) : 5/19/2010 2:06:47 AM (GMT-6)


Ashworthml
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Date Joined Jan 2010
Total Posts : 222
   Posted 5/19/2010 3:01 AM (GMT -7)   
the NHS hospitals dont cater for low residue diets, they have for diabetes,vegetarians and stuff like that but no low residue diets, I battled last time I was in of what I could have on the menu as everything dish on the menu had something on I couldn't eat!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
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levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


Escalador
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Date Joined Jul 2009
Total Posts : 103
   Posted 5/19/2010 3:13 AM (GMT -7)   
here in Croatia they have their special diets for every disease, but If you feel you can't eat something they adapt to your needs (as much as they can)
I usually get a high protein / low residue diet, 5 meals a day (if you want more, just ask)...suits me fine
of course I cant vouch that its like that in every hospital here, but in my town, thats how it is

Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 5/19/2010 6:11 AM (GMT -7)   
My hospital gives me a low residue diet. It has quite a bit of variety too. And yes there is a little sheet that you pick what you would like to eat. It has like 3 main course choices, with your choice of sides and drink and dessert. I am due to have a knee replacement this summer, and have already discussed with the Ortho doc my diet. Good post Ivy!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
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Date Joined Apr 2005
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   Posted 5/19/2010 7:17 AM (GMT -7)   
Some place in my chart it states that I am lactose intolerant, but I can have a bit of milk, like in tea or the little bit I have in cereal. So when I fill out my card the kitchen staff takes off the milk products and I am left with no milk products at all. It gets a bit frustrating even after explaining that I can handle a bit of milk, they still take it off.

Basically they have several choices, but not much in the way of low residue so I end up with a pretty similar diet day after day, which is OK. That way I know it won't bother me, since I'm already in a fragile state, I might as well play it really safe.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


leysa
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Date Joined Oct 2009
Total Posts : 111
   Posted 5/19/2010 8:04 AM (GMT -7)   
When I was in the hospital about 2 months ago, I was on a clear liquid diet for a day, then moved to a low residue diet. The low residue diet actually had a decent amount of options and wasn't bad at all - I was impressed. :)
30/f
chronic active colitis/possible Crohn's - unspecified IBD - waiting on a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Darvocet or Lortab as needed for pain


appy.lovee
Regular Member


Date Joined May 2010
Total Posts : 88
   Posted 5/19/2010 10:07 AM (GMT -7)   
I always go to Rhode Island Hospital and they always cater to my needs, I don't even have to say i need a low residue diet, usualy i go in start off NPO, then go to clear liquid and then to low residue, and they have tons of options for me to chose from. Since im lactose intolerant they also give me a choice of lactaid or soy milk (which i usualy go for)
imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.


Homeboy
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Date Joined Dec 2005
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   Posted 5/19/2010 12:13 PM (GMT -7)   
When I am in the hospital, they usually don't let me eat anything.

When I start to eat stuff, then they start filling out discharge papers.

GDen
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Date Joined May 2009
Total Posts : 703
   Posted 5/19/2010 1:10 PM (GMT -7)   
They had several special diets when I was in the hospital. I was on a low-fiber, non-spicy diet. Anytime I strayed from that when ordering the nurse said "sorry." But there was still a great deal left to choose from.
Cimzia, Asacol


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/19/2010 1:29 PM (GMT -7)   
Logistically, then, how do they do it?

Do you have a special menu sheet for each diet (or, in Croatia, for each medical condition)? Or is all this stuff programmed into the computer and does it automatically reject anything it thinks is unsuitable for you? Or do the nurses arrange all this and decide what works for you and what doesn't?

As you can probably tell, I'm sitting in on the hospital meetings about this. The staff have all sorts of information about what works at a bureaucratic & kitchen level, but not much info about what works and doesn't work from the patients' point of view, and that's why I'm asking: I'd like to be able to sound informed at the next meeting and be able to speak from more than my own experience.

At our hospital, there seems to be a basic menu for everybody, and they just remove from your plate anything you're not allowed to eat. A person on a special diet gets pretty hungry and cranky after a day or two of so little food!!!!!

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 5/19/2010 1:37 PM (GMT -7)   
they NPO me everytime....so depressing!!!!! hate eating ice chips
Psalms 9:18
But the needy will not always be forgotten, nor the hope of the afflicted ever perish.

Finally awarded disability after 4 long years! Thank God for attorneys!
Dx'd with Crohn's colitis May 05, spread to ileum as of 08'-- Currently on Humira every 2wks, Pentasa, Entocort, Phenergan,Zantac, Ambien


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/19/2010 1:39 PM (GMT -7)   

songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 5/19/2010 1:43 PM (GMT -7)   
oh that dang medical term....no "something" by oral....I forget

basically NOTTA to eat or drink....I hate it!!! i always get paralytical bowel so they never let me eat anything Im lucky to get clear broth
Psalms 9:18
But the needy will not always be forgotten, nor the hope of the afflicted ever perish.

Finally awarded disability after 4 long years! Thank God for attorneys!
Dx'd with Crohn's colitis May 05, spread to ileum as of 08'-- Currently on Humira every 2wks, Pentasa, Entocort, Phenergan,Zantac, Ambien


Homeboy
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Date Joined Dec 2005
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   Posted 5/19/2010 3:30 PM (GMT -7)   
NPO is short for the Latin words nil per os, which means nothing by mouth. smilewinkgrin

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/19/2010 4:59 PM (GMT -7)   
Yeah I get NPO or liquids only alot. The main thing I have found that instead of offering specific meals, because the VA does it like a school menu (and just removes what you cannot eat) and the private hospital I am at does it like a small restaurant. I like the restaurant style better. I can order exactly what I want that is safe for me. The menu has little letters like C for cardic diet option, D for diabetics, etc. and you order from there.

Plus at the private hospital there is a snack room on every floor, that has powered soup (just add water and microwave right there), powered broth, puddings, jello, ice cream, all sorts of different drinks, and other fairly safe foods, that you have 24 hour access too.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

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Zanne
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Date Joined Apr 2005
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   Posted 5/19/2010 5:05 PM (GMT -7)   
Ivy,

In my case, someone from the dietary staff has come up to my room to go over my food selection for the next few days with me (this was when I was in the hospital for something other than CD, but so that the CD was taken care of). They asked about what I could and couldn't eat. Even though I told them I could tolerate some dairy, they would end up pulling it from my tray. I'm guessing that it was a computer program and then a staff member pulling it because you would get your menu sheet back with the non-allowed item crossed off and the other items checked off.

When I was in for CD related trouble it was even stricter policy. I can tolerate Ensure and boost, but they wouldn't allow those either. I had to have the non-dairy alternatives, which are not very appealing at all. But over all it was the same policy, someone from the dietary staff would come up and discuss the options with me while I filled out the menu. As far as I know it is the same menu for the entire hospital and then the just add in for anything special if they have to. I have also been in one of the major hospitals in Boston and it was a similar situation there. Same menu for the whole hospital, pick and choose. Someone came and discussed what you could have and how to help you. My room mate at that hospital had CD and Celiac and they were excellent at making sure she had what she needed on her menu, but it was a bit of the same old thing day in and day out. We were there for a week or so and she had the same thing over and over, so not much choice, but it was diet compliant.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 5/19/2010 6:44 PM (GMT -7)   
Canadian hospitals cater to the patient. I get whatever I ask for. Sometimes they sent me something by mistake, like sending me reg. milk instead of lactose free. But they fixed it quickly.

Aimee =)
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Date Joined Jun 2004
Total Posts : 1020
   Posted 5/19/2010 8:27 PM (GMT -7)   
I do not have the hospitalization exp that many others have. I've been hospitalized 3 times. 2 for major flares, 1 for surgery. At both flares, I wasn't eating anything solid. My GI was okay with me eating anything that would go down so I lived off tomato soup. They had it at the nurse's station and they would microwave it all day long for me. I was starving, but couldn't eat. They didn't even bother with food service, if I remember right.
 
For my surgery, it was nothing but ice for 3 days, then liquid only for a few days. Again, the nurses found tomato soup for me and then I moved to a liquid/mushy diet that the food service did that was broth, jello, yogurt, etc. I ate very little.
 
My surgeon told me that as soon as he ordered a full diet for me, my insurance company would want me gone =) We did do full diet the last 2 days but I was scared to eat anything solid until the night before I went home.
 
I found that in both hospitals, they were very willing to help anyway they could. Plus I also had family/friends willing to bring stuff.  

mbw1103
Regular Member


Date Joined Apr 2009
Total Posts : 71
   Posted 5/19/2010 8:34 PM (GMT -7)   
The last time I was in the hospital i was on a low-residue, dairy free, gluten free diet.  I progressed up from liquids to soft foods to solid foods.  I ordered from a menu and it worked sort of like room service in a hotel - I would call the kitchen to order, a human took the order and used a computer program linked to my chart to determine what was/wasn't allowed.  It led to a really interesting lunch one day (i was getting close to discharge, so i was back on solid food).  My first few choices weren't allowed...i finally said I would have a hamburger without the bun.  The operator informed me that a hamburger wasn't allowed on my diet and after a brief pause said, wait you can have a cheeseburger without the cheese and bun.  I said great and still laugh when I think about it.  It's definitely an imperfect system -- i've seen similar systems at several hospitals in the states, but some are able to implement it much better than others.
 
Melissa  
34 - Diagnosed with Crohn's in Nov. '05
Current Meds: Apriso, Canasa, Methotrexate, Pamine Forte, Aciphex, Domperidone, Folic Acid, Restasis, Plaquenil,  Xyzal, Zyrtec, Align, Calcium, Vitamin D, Centrum, Digestive Enzymes, Thera-tears Omega 3 Supplement, Co-Enzyme Q10
Gluten free since Aug. '03


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/19/2010 10:02 PM (GMT -7)   
mbw, what happened if you forgot to phone the kitchens in time? Would you not get a meal?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/19/2010 10:27 PM (GMT -7)   
Hi Ivy 

When I was in the Logan QLD hospital for a week, I was newly diagnosed and simply ate what they gave me. This was about 4 years ago.

Last year I was in the QE2 hospital in Brisbane with my abscess severely infected, and was treated with IV antibiotics. I was there for a week and a half and it was not until the last day I was there that a dietician finally came to consult me on what I could eat (by this stage I was on the SCD). This only occurred after my sister made daily requests on my behalf. I was so nauseas from the antibiotics I barely ate anyway – but I remember at one stage grabbing my drip stand and running down the hallway at 6:30am saying “I cant eat weetbix!!” – I’d requested special K or something low-residue, even though its not SCD-legal, and they still gave me weet-bix! This I thought was horribly inconsiderate. If it had been a diabetic or even a celiac I think they would have been more accommodating. Guess its because of the ignorance towards Crohn’s in general.

Now I am being treated through the Royal Brisbane, with leading Australian IBD specialists, I am confident that if I say ‘SCD’ I wont get a baffled look! Or at least they will listen to me and take the dietary considerations seriously! That’s all I wanted….

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/19/2010 10:53 PM (GMT -7)   
Yep, the lack of dietitians is something they're aware of here, too, and are trying to address. It's a problem, innit, esp on weekends.

I've had the Weetbix problem too! They seem to dole those out as the default breakfasts here, unless you specify something different. Yuck.

Another question: do you have a choice of, say, vegetables, with your meals, or do you just have to take what's provided? This can be a big problem for a lot of us, I'm guessing, as there's a lot of difference between a peeled carrot and some beans.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/19/2010 11:21 PM (GMT -7)   
It’s definitely a problem. I didn’t have any choice – it was ‘toast or cereal’ (both illegal) for breakfast (I just ate banana if it was offered) – or sugary yoghurt (also illegal)

Lunch was always sandwiches (illegal)

Dinner was usually legal-ish (minus the potatoes) – but so disgusting I couldn’t stomach it (they call that beef and gravy? Oh it was horrid!) – no vegetable choices on that one either - and by the end of the day I was usually too nauseus to eat. My sister would bring me cans of tuna, apples and bananas, and I would eat the dessert (custard, also not legal, but all I could stomach).

Sis (god bless her) also bought me a quiche and left it with the staff in their fridge so I had something I could eat!

There was really no choice in the QE2, even Logan offered me more choice, but I am sure the royal Brisbane would have been a lot better.

Oh why do they insist with the weetbix!? Ahhhh! Low sugar high-fibre – and cheap – I guess….

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/20/2010 6:14 AM (GMT -7)   
At my hospital (part of a HMO) they either have the dieticians come up and help you select, or sometimes I just get the sheet and pick what items I want from main course, side, drink and dessert. We actually have pretty good food at the hospital I go too and it generally agrees with me pretty well.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 5/20/2010 10:01 AM (GMT -7)   
Roni's comment about Canadian hospitals catering for the patient must depend on the hospital. I was in hospital for 3 days last year in Toronto and only for one meal could I eat the clear beef broth that was on the menu, but was unable to eat any of the rest of their meals during my stay. There was a set menu for everyone and they just took off what I couldn't eat according to their notes. For 2 days I could not leave the floor because I was attached to the wall and the nurses didn't want me leaving. On the final day I "escaped" to the Tim Horton's coffee shop on the ground floor to get some food. It was not fun at all. Also, lactose/soy milk was not even an option.

The other problem is that the meals come whenever, and if you are off getting a procedure done the meal is left in your room. That means COLD beef broth if they haven't actually removed the tray before you get back!! Then it is impossible to get anything to eat. The floor generally has some sandwiches which are usually cold cuts on whole wheat bread - sure, I'll eat that!! All in all, eating in hospital is not a great experience. Best to get someone to bring you food. I spent a year, on and off, delivering food to a friend who died of colon/liver cancer 2 years ago. It was in a different Toronto hospital, but the experience with the food was the same as mine.

In answer to the original question, then... my experience was that they had a limited ability to cater to individual dietary needs, and I did not get enough to eat or any variety.
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Nexium, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.

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