Desperate for nutrients

i developed what we eventually got diagnosed as crohns during my pregnancy. hes now a healthy 6months but im a very unhealthy 15months of trying to cope with a disease i had never heard of. a flare for me goes thusly: something sets me off, i get abdominal pains that gradually increase in frequency and intensity throughout the day until i spend all night throwing up with diarrhea; at this point i go to the ER for pain meds and IV hydration cuz water makes me vomit. i spend three days to a week in the hospital on no foods > clear liquids > full liquids, flipping between cipro and prednisone for inflammation, and flagicyll for nausea. during these times ive had xrays, bloodwork, MRIs, catscans, two colonoscopies, and the last time they inflated the lowest of my two strictures with a balloon. im scheduled to get my first Remicade infusion tomorrow.
ive been seeing a nutritionist and thru her have done a blood panel that revealed food intolerances: gluten, candida, soy, casein as well as bell peppers, brussel sprouts, cucumber, oat, salmon, avocado, celery, codfish, egg yolk, frctose, green pea, olive, sesame, squash, almond, asparagus, brewer's yeast, butternut squash, cabbage, carrot, cauliflower, garlic, hops, lobster, mustard, pineapple, spinach, tomato, and turkey. im aware that diet is not necessarily directly related to flare ups, but i also know some people have found trigger foods so im working on an elimination diet to try and find 'safe foods' that i can survive on when things get bad.
things are currently bad. im on day six of trying to avoid the hospital so i can make my infusion appointment. avoiding the hospital, aka: survival mode, goes thus: waking up, drinking water / 100% cranberry juice / coffee / hemp milk / coconut milk / rice milk / green/black tea / ultra inflamx 360 medical food. three days ago i tried a banana smoothie (banana / rice milk / ice) n had more pain (but stayed out of the hospital, so mission accomplished). regardless of this survival mode liquid on diet, i still end every night having to take a vicodin n hot bath to quiet the pain to a level i know will keep me away from vomiting n getting dehydrated n having to go back to the ER.
so i can feel my body starving for nutrients. im asking if anyone has suggestions on how to improve 1) survival mode; 2) weaning back onto solid foods (when/how); 3) how to avoid falling back into survival mode. please help me.

Hi and welcome.
Let me say what a cute baby. It just seems yesterday Grace was that small.
She's the reason I'm on this forum.
Your thread caught my attention because of the food allergies.
FA's are a way of life for us.

Let me ask first, do you see an allergist?

Have you only had the blood testing for allergies? Was the test called RAST?

The thing with any testing for allergies (food or environmental) is it's NOT 100% accurate.
Case in point is Grace tested negative to everything on the RAST test but positive to everything on the skin prick test.

Also have you heard of special medical formula (EEN or EN)?
The formula is made to be gentle on the gut so the gut can heal.
Here's a link.
http://www.crohnsforum.com/showthread.php?t=23607

I'm really glad to hear you're being put on Remicade! Remicade is a biologic, which is a category of miracle drugs for many of us. Almost everyone with Crohn's has to be on maintenance medication, whether it's a 5-ASA (local anti-inflammatory; doesn't work for everyone), immunosuppressant, or biologic. This will help you get out of flares and will also help you stay in remission! Even when you get into remission eventually, you still need to stay on that medication to help keep you there, too.

I hope the Remicade works for you.

Green tea/black tea can dehydrate you and upset your stomach because it contains caffeine. You may want to look into rooibos tea (also known as "red tea" or "red bush") which naturally has no caffeine. I would recommend a vanilla rooibos to get you started, since it's a lovely flavor. Otherwise, I'm sorry to hear you're having such a tough time with your diet! Most of us eat only a low-residue diet when we're in flare to help our bodies. Sometimes people also go on enternal nutrition, which you should talk to your doctor about since that would hopefully give you all the nutrients you need, and would also be in a liquid form.

If I can answer any other questions, let me know!

Also I believe Vicodin is a NSAID which has been shown to irritate the track and cause problems. Has your GI ok'ed the vicodinI know. GI's can differ.

Update: I was wrong about Vicodin being a NSAID, Sorry.

There is a distinct difference between IgG testing positive ( you are suppose to test positive to those ) vs IgE testing done by an allergist either blood or skin .
Without a history of reactions even IgE testing has a high false positive rate.
That said a lot of crohn's people do better when they are on a all formula diet.
It has been found in kids at least to be as effective as pred to reduce inflammation .
DS took only peptamen jr in for 9 weeks no other food.

I really hope the remicade works.
It was a miracle drug for DS but it did take three infusions to work (6weeks).

Has your Gi given you zofran for the vomiting this really has helped DS .

thank you everyone for taking the time to read and reply. it helps just knowing im not alone.
1) i do/did not see an allergist (shud i, if i regularly see my nutritionist?). im not sure what the test was called. she took three viles of blood and sent them away to be tested. the panel came back with categories: severe, moderate, mild, and acceptable (tho i know i can't eat all the foods that are allegedgly 'acceptable' becuz of their high fiber content. (will i be able to eat high fiber now that im on Remicade? if so, how long do i have to wait? do i keep introducing one food every 48hrs? does everything still have to be over-cooked or pureed? can i ever have a salad with all the dark leafy greens i cud ever dream of (minus spinach, cuz of my intolerancy)?)) shud i get a skin prick test as well? if the skin prick results say the opposite of my blood panel testing, off which result do i base my diet? i had not heard of EENs/ENs. thank you so much for that link. knowing i can viably survive on just liquids gives me so much comfort by greatly reducing my fear of nutrient and vitamin deficiencies or falling back into this cycle of food > pain > fear of food.
2) thank you for the tea info. i've been doing black and green teas becuz i know they're helpful in maintaining healthy liver function. the caffeine i get from my coffee and green/black teas help me maintain the illusion of energy for my family - especially my little one. i haven't experienced caffeine-induced diarrhea or gut pains and i know to look for signs of dehydration in the color of my urine (dark is bad, clear is best). grandpa recommended and purchased for me some red rooibos tea a few months ago. i love to switch between it and chamomile to sooth my mind before bed; im not sure if its diet- or medication-induced, but i often go through days of insomnia. the tea helps a little. instead of a racing mind all night, at least i get more of a meditative - if still awake - mind.
3) i will definitely ask my GI if the vicodin is hurting more than its helping. why wud a doctor prescribe something that hurts more than it helps? on a related note: do i have to worry about my intolerances and medication? for instance: is there such a thing as gluten-free vicodin?
4) what does IgG and IgE stand for? what's the difference between the two? before my pregnancy, i'd never had any negative reactions / intolerances / allergies to anything, food or environmental. did i have these intolerances my entire life and was asymptomatic? or did the crohns cause the intolerances? or did the intolerances cause the crohns? i know intolerances can change, and if i get retested a year from now, i may have an entirely new list. what causes the body to gain or lose food intolerances? what does an intolerance mean, functionally? if i'm gluten intolerant, but eat gluten and have no immediate negative reaction, then continue to eat gluten and still have no negative reaction over the course of a year, is it hurting my body in ways that just aren't noticeable to me but eventually do things like aggravate my crohns?
4) i get zofran for nausea when im admitted to the ER and a script for the generic when they release me. nausea really isn't an issue for me until the abdominal pain becomes so severe it causes nausea and vomiting. i think my body at that point does everything it can to get whatever is causing the pain out of my system - ie: vomiting and diarrhea. i know the inflammation has caused complete occlusions twice, so any water i attempted to drink came right back up by simple fact of having nowhere else to go. then its ER / IV / steroids / anti-nausea / painkillers / antibiotics time. i hate those times cuz i don't get to hear my son giggle for days. and that drives me crazy.

:facepalm:Sorry Vicodin is NOT an NSAID. Sorry, I was thinking of another drug.

YES to seeing an allergist.
Their trained specifically to help you figure out what reactions
(IgE and non-IgE) could be happening.
Also skin prick testing might be of benefit to you.
Food allergies aren't always hives or vomiting. Sometimes it's more subtil and having a doctor to help might be of value.
I'm not against dietitians, my girl has two.
However they always want advice from her allergist before making changes.
The allergist runs the show.:hug:

Plus, EEN or EN is usually cover by insurance. My Grace's bill comes to about 1500 dollars a month. Thank God for insurance.

Also, as to the food and constancy and such, a GI should be directing you first.
He/she is trained to know how the gut works and what it takes to heal. All those great questions should be asked to the GI.

Just to give you the order of command in Grace's health care team................
1-GI- makes the call on meds, testing and timing of entry of foods.
2-Allergist, Once food is introduced we talk it over with the doc and he either test (SP or RAST) to that food or he tells us the warning signs again.
3 Dietitian , comes up with food ideas in the approved food group.

An Allergist will walk you through all the testing and what the results mean.

update: after 6 weeks on just liquids (hemp/coconut/rice/rice+quinoa milk, 100% juices, coffee, water, green/black tea w lemon, peanut butter, ultrainflamx360plus), my second remicade infusion, and the hopeful addition of 1t of slippery elm bark powder into my nightly tea every day, i'm officially flare-free and on my second week of solid foods again. yay solid foods.

Yay!! That's so great to hear. :hug: Hopefully you stay flare-free for a long time.

Hi =)
I was reading your story and reading through the post, and I am so happy that you are feeling much better! I am currently 24 and I was diagnosed with Crohn's at the age of 14. I have to say, though, when I experienced my flare ups, I could not tolerate any of the foods you had, such as milk products, coffee, etc. I had to stick solely to boiled chicken and mashed potatoes for about 3 weeks. Anything with citrus, acid, grease, onions, green leafy foods, etc. caused me to experience pain and constant bathroom breaks. But everyone does react differently.
I was wondering, however, if you have heard of Geritol? I know it is very old, but it is a great multi vitamin and helped me greatly. Research it and you will see that you can get many, if not all, of your vitamins and minerals. One disadvantage, though, is that I heard Geritol can increase fertility in women, so you may want to be very careful while taking it. But anywho, I was told at one point by the doctors when I had to have six blood transfusions that I would never be able to menstruate again, but after I began taking Geritol within a couple days, the doctors were proven wrong and I had a great boost of energy.
I wish you the best, and YES, your child is beautiful =)

hey, love.
my casein (the protein in dairy) intolerance leaves me in a life without dairy; so when i say milk products, i mean juice that has been excreted from various non-animal sources (coconut, hemp, rice, quinoa, etc) and labeled 'milk'. sorry about the confusion. but yes: i have noticed that dairy, in general, tends to be a problem for crohnies and ibs'ers alike. it seems to be one of the few things we have in common. when it comes to coffee: are you positive that its the coffee that bothered you, or the things we put in our coffee - milk, creamer, sugar, vanilla extract, spices, etc.? cuz life without coffee is sad indeed. when it comes to citrus: i've been advised it can be troublesome so i've just stayed away from it as a precaution. i'm not sure yet if it actually is an issue for me. during my flares, i drink a plethora of juices, some of which are combinations of nectarines and oranges, and i'm constantly cooking with lemon and lime, but i haven't yet experimented with adding a good old raw orange to my diet. perhaps that will happen in the near future (currently on day three of all liquids trying to sidestep a flare), as i know oranges are one of the healthiest foods (http://www.washingtonpost.com/news/...ow-much-nutrition-they-contain/?wpisrc=nl_eve). same with high-grease or oils: hearsay avoidance. onions, however, are anti-inflammatory so they were one of the first things i added to my elimination diet without any painful consequences. i just make sure they're well-cooked and sweet.
i had not heard of Geritol. thank you so much for the suggestion. since my symptoms first surfaced during my pregnancy, after the birth of my son i simply continued taking my one-a-day women's prenatal vitamin. when i get to eat solids, i make a point of having the foods in on my illusionary 'safe' list be those that are most nutrient dense so i can save my vitamin supplements for more dangerous times. i will look into geritol next time my prenatals run out and see what the supplemental and price differences are.
and since you bring it up, i've noticed i haven't menstruated since i gave birth in december - that's almost seven months. i haven't thought to talk with my doctors about it yet - my mom says its normal to lose your period for 'a while' after birth. i was wondering if, in your talks with your doctors before you found geritol, what is your understanding of crohn's-related stress on the body and menstruation?
and yes: the most beautiful!