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Crohn's Disease
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Posted 4/5/2012 2:33 PM (GMT 0)
Hi everyone today is my 15th day in the hospital I can't wait to go home. Hopefully today I will be discharge. I feel much better then the day I came in, but still have abdominal pain after i eat. I was flaring for monthes but though its just crohns syntoms and let to much inflammation to build up so I did make a mistake not coming to the hospital as fast as possible, but I blame my gi also because I would always go to him and he would take my blood test and would say its crohns symptoms and send me home. In the hospital they currently have me on prednisone 40mg they tappered it down from 100 mg, pentasa 500mg 3times a day and imuran 50mg twice a day and antibiotics 14th day and counting. Also they have me on a picc line for tpn and fat emulsion because im losing to much weight im down to 115 from 160,, also they want me to start remicade monthly infusion but they still waiting for approval and that I have to deal with my GI seperately,,

So I was wondering if any body been through this and how they got through this. I feel like theres no hope of things getting better. I have to drop all my classes because I missed to many days and thats stressing me out. This is the 2nd time this happened to. I was doing so good and went to college for half the term and then had to withdraw cause of health. I know health comes first but this disease is terrible idk how oma be able to get a job if things comtinue like this,, also the 1st thing im going to do is change my diet and try to eat alot even if im on a picc line somehow get 2000 plus claories with safe food, but only stuff that are safe.

So what are your safest food and snacks? Please include brand names or any info about it so it can be easier for me to buy it or recepie for something you always make to eat or drink that helps you all the time. Thank you in advance.



Just added a little punctuation to make it easier to follow.

Post Edited By Moderator (Roni) : 4/5/2012 8:14:59 PM (GMT-6)

Posted 4/5/2012 5:54 PM (GMT 0)

bkzb0y1 said...
...its just crohns syntoms and let to much inflammation to build up so I did make a mistake not coming to the hospital as fast as possible but I blame my gi also because I would always go to him and he would take my blood test and would say its crohns symptoms ... this disease is terrible idk how oma be able to get a job if things comtinue like this,,also the 1st thing im going to do is change my diet and try to eat alot even if im on a picc line somehow get 2000 plus claories with safe food but only stuff that are safe ....

Hey, I hope you continue to improve, and I'm glad to hear that your medical team is looking out for you.

 

The thing that bothered me most about your post was the first bit I excerpted above - there's a lot wrong with "crohn's symptoms" and your DR should have been treating you long before you got to the hospital.  Most of us find that we need to be taking medicine all the time, even when we're feeling well.  This helps maintain our remission.  When you get out of the hospital, you should have a plan - whether that's Pentasa and Imuran, or remicade and imuran, or just remicade, whatever - you need to follow the plan.  If you are starting to feel bad and your DR says "it's just Crohn's," the next words out of your mouth need to be "how are we going to deal with this so that it doesn't get worse and I can get better?"

 

about your weight  and what you eat - Many of us find that we have to do a lot of detective work to figure out what's safe for us.  It's a very individual thing.  But for starters, ask your DR while you're still in the hospital for a consultation with a nutrition specialist who is experienced with inflammatory bowel disease.  That person can help you decide how and what to eat.  The hope is that you will achieve a complete remission and be able to eat whatever you want.  Of course, I gather that you are a young adult and you might not even know what a healthy, balanced diet looks like (especially if you're surrounded by a bunch of junk-food loving friends).  Learn how to eat well and how to prepare your own healthy food.

Posted 4/5/2012 6:02 PM (GMT 0)
That was really helpful but safe food examples is the part im asking for
Posted 4/5/2012 6:11 PM (GMT 0)
Everyone is different with regard to "safe foods." That was my point.

However, if you really want to explore here, the most common food issue for all adults is lactose (the sugar found in milk). Most people, at some point in their lives, become lactose intolerant to some degree. THIS DOES NOT CAUSE INFLAMMATION. What it does cause is bad gas, diarrhea (for some), nausea and vomiting (for some). If you think that you may be lactose intolerant, you can avoid foods containing lactose (milk, ice cream, soft cheese) or you can take a lactase pill, which will help you digest the lactose when you eat it.

Another common culprit for Crohn's patients is food with a lot of fiber. If you have serious inflammation in your gut, you will often be told to follow a low residue diet. You will have to ask a nutritionist for more info on this, but in essence you can't eat whole grains or uncooked fruits and vegetables.

I ultimately decided to try a gluten-free diet, because gluten is another relatively common culprit in digestive complaints. I learned by eliminating wheat, barley and rye completely from my diet for 3 weeks that I felt much better and my bowel issues were largely resolved (I also continued to take all of my medications). I have followed this diet for 10 months now and do not regret it.

I hope that is helpful.
Posted 4/5/2012 9:22 PM (GMT 0)
Many have found that apple sauce and chicken broth to be relatively safe. If you are going to eat food with fiber then soluble fiber such as Metamucil or pectin is better than insoluble fiber such as oat bran. Common UNsafe foods are gluten and dairy, but everyone is different.

The ultimate in safe foods is probably the elemental diet which is intravenous feeding for some IBD patients who are hospitalized.
Posted 4/5/2012 10:38 PM (GMT 0)
For me, safe food is rice, boiled potato, some pasta (doesn't irritate my intestines), broth, chicken (either boiled or grilled w/o any spices) and bread. I have to get away from fibers. So, no veggies or fruits. What about Ensure? A small amount of it, 3 teaspoons of the powder one in the morning made my bloodwork normal. Can you tolerate it?
Hope you feel better soon:)
Posted 4/5/2012 11:21 PM (GMT 0)
I'm the opposite of most in that I have no problem with raw fruit and veggies, dairy , nuts or beans but red meat, pork or poultry send me to the bathroom within an hour.
Posted 4/6/2012 1:23 AM (GMT 0)
Hi every1 thanks alot for all the information I might also start the scd diet just ordered breakig the vicious cycle hopefully it will works on me if not then might start gluten free that one sounds more fun because it got all the cookies and dougnuts but I doubt it will effect me In not that lucky lol
Posted 4/6/2012 2:16 AM (GMT 0)
Sorry to hear you've been in the hospital.

Often people find some success with dairy free/gluten free. Also sticking to a more natural and low sugar diet during a flare is helpful.

Best wishes!
Posted 4/6/2012 8:21 PM (GMT 0)
I dont know what to say I went on the net some sites say eat this other say dont, its frustrating. I found if I stick to a bland diet, like soups and plain sandwiches. My day is this, half cp ceral, lactose free. ( I do no milk products) Half banana, lunch cup chicken noodle soup(lipton Watered down) sandwich on wheat bread, one slice bolonga. super I eat very light maybe some rice and a half cp steamed veg, with a small portion of fish steamed. Now if I can stick to this daily I can usually go a week without a flare, but its not fool proof. I am going to go to a book store to see what I can find. Its hit or miss I think. I wish if someone had the answer it would be posted :) I wish you luck, you need to find what works for you, the one person said keep a food diary if it makes me sick I highlight it, and its not going to be in my diet. These people are wise, I have learned so much about this disease from them.
Posted 4/6/2012 11:09 PM (GMT 0)
Hi dusty thanks alot and thats all I been doing for the past few days just searching up which food is safe for most.people so far salmon fish white bread and chicken seem to be good.for.me also.and I been reading alot of people eat white pasta peanutbutter and almond milk so thoes are next on try list and I cant handle ensure I guess I gotta break it in same portions and try that
Posted 4/15/2012 11:07 AM (GMT 0)
did you find something you can eat?? cause my method went to the wind,lol im reduced to bland soup. and I have to take an immodium to eat that. :)
Posted 4/15/2012 3:33 PM (GMT 0)
Hi,
I have answered your post about clay. I just forgot to tell you to space the taking your meds and the clay about 1-2 hours because clay will neutralize the medication.
You asked about safe foods. For me, during my worst times the only things I could eat was: boiled rice, well cooked oats, boiled/baked potatoes, soft boiled eggs and well stemmed vegetables in a little olive oil(carrots, zucchinis, bock choy, peppers with a little garlic). I also could eat a lot of apple sauce. Basically think BABY FOOD.
Stay away from meat, fish, anything fried, breads, sugar yeast, bananas, grapes, fresh salads or anything with rough fiber. Eat every 2-3 hours small meals.
Posted 4/16/2012 6:23 AM (GMT 0)
Another easy meal is gluten free cereal with coconut milk.
Posted 4/16/2012 8:47 PM (GMT 0)
I am so sorry to hear you are in the hospital, hopefully you will be home soon, I too go in for 2 week stretches.

I agree with the other postees, everyone is different when it comes to "safe" food.  It really comes down to trial and error.  I found that keeping a food diary helped, I wrote down the foods that I ate during the day and kept track of any adverse reactions.

This particular way may take awhile to compile a list of foods that are "safe" for you but I found it was worth it.

I also agree that popcorn is one of the worst things you can eat especially because it can cause blockages.  Another thing that seems to cause alot of problems for quite a few people is eating "spicy" food.

I hope some of these suggestions are helpful to you, and that you feel better soon.

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