Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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DivineSilence 03/15/2011

My son was diagnosed with Crohn's less than a month ago after having issues for almost a year... I guess it's a pretty bad flare. We are new to this. While waiting for approval to start Cimzia he is on 60mgs/day of prednisone, vicoden, zofran, vitamin D, and prosilec... he just finished a three week course of flagyl and cipro. It just isn't working and we are doing all we can do speed along the approval of the Cimzia.... in the meantime he is losing a couple pounds a week (even while on 60 mgs of pred) and has lost 10lbs in a month (he was already thin).... My question is... how the hell do you get a flare to stop! just meds? Shouldn't the predinsone be working better? It worked great for abotu a week then he flared up again with vomiting and pain which just won;t go away.... What is the best thing for him to eat or is it best to do liquids only to give the intestinal tract a break.... he does a little better and has less pain when he does liquids only but says he is hungry.... the only things he eats are toast, gatorade, homemade chicken broth and a little apple juice or rice. His doctor is absolutely no help at all.... he just says low fiber, low fat but claims he should be able to eat whatever he wants... he dismisses the vomiting and pain as no big deal. I want to find a new doctor but don't feel like it's a good time to do that with everything up in the air about treatment..... Please help.... is there anything I can do to help him feel better....

deleted_user 03/15/2011

I'm sorry that your son is having such a hard time. It sounds like most of the food you are giving him is great except for the Gatorade. IT has added sugars and they can be problematic- you can use chicken or beef or vegatable broth and diluted all natural apple juice(with no sugar added) to pretty much achieve the same electrolite balance that is in gatorade. You might want to look at the book "Reaching for Answers to Crohn's Disease" by Martha Kalichman(on Amazon). It outlines a dietary regime with low sugar and high probiotics and could help him greatly.

deleted_user 03/15/2011

Apple juice is acidic & can cause diareah, so I would stay away from that; that will cause stomache pain. There is coconut juice with a splash of mango & guava which is better than sports drinks if he needs electrolites. You can find it in the organic aisles in Albertson or Henry's (in California). I eat ice cream made from coconut milk because I have UC & am lactose intolerant. It tastes pretty good & I don't feel like I'm missing out when everyone is eating ice cream. I also buy glutten free snacks. I have made Henry's grocery store my #1 place for food. If you don't have one, Sprouts or Whole Foods are the same thing. Try baked chicken but instead of butter pour a little chicken broth in the baking dish while cooking so the chicken doesn't dry out and then shred it for easier digestion. Salmon would be good also...make a pouch with reynolds wrap and steam the salmon. I know eating is a chore & no fun. Good luck!!!!

2chronic 03/15/2011

Yes you need a new dr. They should at least of given you a list of foods to stay away from! everyone is a little different. Raw is bad, cooked is good. When I am really bad, white rice and baked chicken. Chicken noodle soup. White bread. Ginger ale. I don't drink any juice. Scambled eggs, but I see some people on here can't eat eggs. Good luck.

rcaschbacher 03/16/2011

My Doctor said to stay away from dairy, alcohol, and caffeine. Other than that he said I should be able to eat anything I want. Yeah right! It is trial and error to learn what you can eat at what phase you are in. Try pedia light, I have heard that works well for some people when they are doing really bad. What about the BRAT diet? Bananas, rice, apple sauce (low sugar), and tea/toast. Try chicken and salmon. What does everyone here think of protein shakes? I have not heard anyone talk about them and have wondered if they would be good or bad. Eggs, unless you are one of the few that can't eat them.

AND a new Doctor if the one you have is not taking this seriously. Is he an MD or GI Doctor? If you do not have faith in your Dr. then you need a new one. No matter how good they might be. You have to have a certain amount of trust in your Dr along with self education.

Good luck!!

deleted_user 03/16/2011

My son (11 yrs) also was diagnosed a couple of weeks ago. We have decided we want a second opinion. We have had a endscopy, colonscopy, permethesus test, lots of blood testing and MRI. The doctors said it is 70% chance he has Crohns. My son has been sick also. (Headaches, high fevers, vomiting, not eating). The infection is so bad, that he feels terrible and had no energy. He is currently taking steriods to help shut down his immune system, so the infection goes away. So far, he seems to be getting worse. Does your doctor have a nutritions on staff? We just made appointment with one. Also, I would try gluten free products and organic products. My son like Greek Yogurt with strawberries.

deleted_user 03/16/2011

I have no idea why, but when I am at my lowest point I can eat bagels (yupp, you read that right) as long as I sit for about an hour afterwards, applesauce, and Boost energy drinks. Everyone is different on here though and some people told me to stay away from everything I mention, but it's worked for me.

My GI doctor instructed me to drink gallons of Gatorade only for one day straight when I am at the lowest of the low (we are talking can't get your butt off the toilet). I guess this is to clean out my system and then start all over again with the applesauce and Boost? I know it sounds very strange, but it worked for me. I quickly taper myself off of the Gatorade, however, once I am eating the applesauce and carbs for about a day. I don't think it's good for my stomach normally, but my GI doc said it will keep me out of the hospital (and it did- the Gatorade that is). Three Boost/Ensure drinks have been a life saver for me after I have to go through the Gatorade process. I haven't been able to introduce fruits or veggies yet.

deleted_user 03/16/2011

Oh, and my doc does say no restricted diet (except the low fiber, low residue) which pisses me off. Doesn't help much, but trial and error is the way to go.

deleted_user 03/26/2011

My 17 year old found relief with the "Self Healing Crohn's and Colitis" book by Dr. David Klein. He could only have fresh juice (have to get a juicer and juice your own grapes, watermelons, mangos, etc) and whole bananas. We did this for 4 straight days even though my son was hungry but his vomiting, pain and bathroom visits got MUCH better. Then we added steamed potatoes, squash, zucchini, yams and carrots seasoned with 'table tasty" which can be found on the internet. This was NOT an easy diet for him at first but he was in so much pain that he was willing to try ANYTHING. He did lose alot of weight at first but after "detoxing" all of the processed foods and other stuff out of his system, he started putting the weight back on. I was so desperate that we tried it and it WORKED!! Good luck, I know how painful it is to be a mother with a sick child and you feel so hopeless...there IS hope!!!

deleted_user 03/27/2011

Bluntly? I had a similar course to what your son is enduring; if he's still losing weight and he's in pain, then you should check him into the hospital. I spent a month and a half of starving, losing weight and becoming kitten weak before I threw in the towel. If he's on 60/day and he's still dropping and having huge issues and he's not improving, then it sounds like you need hospital care...just make sure to pick your hospital, if you can...I don't know where you are, but I live in Baltimore, and I went for Sinai rather than Hopkins because Hopkins doctors are research doctors and are more about finding 'interesting' cases than treatment.

I had to make the call myself, when I was laying in bed, the steroids weren't working as well as they ought to (because I was so flared that oral medication was not being metabolized, period) and so forth. Is his doc a GI specialist?

You need to get one of those, and not all GI docs are alike. Shop around for a good GI doc, because the guy that diagnoses your son may be like the guy who diagnosed me -- good enough for walk-ins, but not likely the sort of person you want treating someone that has a complicated condition like Crohn's or UC.

Bottom Line: Your instinct is good; find a new doctor.

deleted_user 03/27/2011

I also sympathize with your son. My son was diagnosed with Crohn's almost 4 years ago. At his worst, he lost almost 40 pounds.

My thoughts when he was in his flare, was similar to you, I thought it was important to make digestion easier for him. About a half hour before eating, we gave him slippery elm to coat his digestive system, and to protect the ulcers he had. We stuck to rice/chicken/veggie broth, smoothies (could be anything blended up so that his body didn't have to break it down itself), and real food (absolutely nothing processed). I have used recipes from Gluten free girl, SCD, and other sources both online and in cookbooks. We also gave him aloe vera juice (Georges) to help heal from the inside out. It took time(almost a year of vigilant monitoring) , but I am very glad to share that he has been healthy ever since.

My first suggestion would be to start keeping a food journal writing down what is eaten, and what comes out/reactions. We also went to an alternative naturopathic doctor, and a homeopathic doctor for advice and guidance. He continues to use vitamins and supplements to keep his body in a strong, healthy state and this also better helps him absorb his food.

For stomach pain and gas, may I suggest peppermint oil capsules. Much easier on the system and they really work.

Best wishes for your son, I hope he is seeing better days soon.

L

deleted_user 03/29/2011

I just posted this same comment on another thread, but I hope it helps you too: I was diagnosed in January and was on Prednisone and Pentasa for 50 days. When that didn't work my doctor wanted to start Remicade and another 50 days of Prednisone. That's when I started a diet called "The Maker's Diet" based on a book with the same name. After 3 days I was off all meds and going to the bathroom 2-3x/day instead of 10-15!! Now I generally go to the bathroom only 1 time each day!! There have been numerous days I've had a regular bm - something I had not seen (or felt) in probably 2 years!! It's been about 3 weeks since I started this diet and this is the best I've felt in over a year. I plan to have my follow up apt. with my GI and tell him the good news and then stop seeing him quite as often!!! I hope everyone can find a holistic approach/diet plan that works for them as I know everyone's body is different.

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