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Hi this is my first time writting to anyone but just seeing you all care for one another is so great. My son has had crohns since 2000 and we have tried everything im sure. He has never been in remission and still on lots of medication. He takes Humera once a week methotrexate shot once a week, asacol he just got fluids last week and at the end of the week they had to give him blood transfusion's. He has also been on remicade, enercort, predison, flagly and if i've missed anything its been taken. He has been so good about it and grew up fast with it  but now hes to the point he's  had enough. As a mom I just want to fix it but I can't its driving us crazy. We now are looking for a diet please help us. Thanks

 Reply posted for momonamission.

Hello,

I'm not sure how old your son is, but you said he went all the way through high school, so I'm guessing he may be in college/working. Medications help, I also take Humira once a week, and i switch from meds to meds a lot (i'm at a good place right now with the meds). He might want to take some antibiotics or sterdoids for a couple of weeks to see how that  controls it. Also, going to a nutritionist may be alright. They don't give you a step by step on what to eat and what not to, but they tend to have a decent idea on how to start you up on eating right. The best thing that I can tell you from personal experience (I'm in college now) while having Crohn's is that I go to a counselor. They're not miracle workers, but it's easy to tell them things that you can't describe to even your family or friends. They help you accept what you have and who you are, and they give you advice on how to manage your daily events in a manner that won't be so stressful. I suggest that your son should see one if he doesn't already.

 Reply posted for Concerned Mom.

Thanks for the information on the books I will have him keep a journal...I'm sorry about your daughter. Thats about the same time my soon was diagnosed with chrons...I hope she is doing well make sure she's on the 504 plan. At our school you could not miss much school so the nurse got him on the plan it saved him from so much stress...I hope she is well right now... Thanks so much momomamission

 Reply posted for kawaiir.

Kawaiir' Thanks for your informatin I will have him start logging his foods down. The doctor just uped his humera sooooooo.... we'll see how that goes. At this time all we can do is pray. Thanks so much for your information and i hope you have a good weekend...

 Reply posted for momonamission.

My 8 year old daughter has Crohns.  I would agree with others that keeping a food journal is a good idea and I would also regulate portion sizes.  I have read lots of books, two that might help are "Eating Right for a Bad Gut" by James Scala and "What to Eat with IBD" by Tracie Dalessandro.  They are not scientific journals but has some useful information, because everyone is different and you never know what will work I think any information is worth considering.  Good luck!

 Reply posted for capthugh.

Thanks for your info im headed to the web sights right now...I know in time things will get better and we pray soon he will go into remission. We have been patient for so long. But i know there is alot of people in the same situation. I just want him to beable to have fun in his collage years and doesnt feel like he needs to stay home. He seems to get very nervous now . I would hate for him to have to go on meds for that too. But maybe that would relax him and not worry about everything eles. He has been the best son and has delt with so much from 5th grade and all the way though high school. He played all sports basketball football and was very good in golf.  Its something what people don't know what a person goes though to do this stuff.  And for him he never wanted anyone to know.  Thanks for your kind words and the information......Hope you feel great this weekend.....

 Reply posted for momonamission.

I am sorry to hear your son is having a hard time and I can relate.  I have been on many of the medicines you mentioned and when I have a flare it sometimes takes awhile to get me in remission.

Does your son take probiotics?  This is very helpful for me.  I take a probiotic called VSL#3.  You can look it up online and order it online.  It is shipped to you. 

I also have talked to a nutritionist a couple of times when I have been sick and was told that diet is different for everyone with Crohn's.  I find this frustrating, but I agree with making a log of what he eats and adding only one new thing at a time.  That way if something bothers him he will be able to pinpoint it better.   I would recommend talking to a nutrionist if you can. 

Another book that might help is one called Breaking the Vicious Cycle. 

Good luck and I hope your son improves soon.

 Reply posted for momonamission.

I am sorry to hear your son is having a hard time and I can relate.  I have been on many of the medicines you mentioned and when I have a flare it sometimes takes awhile to get me in remission.

Does your son take probiotics?  This is very helpful for me.  I take a probiotic called VSL#3.  You can look it up online and order it online.  It is shipped to you. 

I also have talked to a nutritionist a couple of times when I have been sick and was told that diet is different for everyone with Crohn's.  I find this frustrating, but I agree with making a log of what he eats and adding only one new thing at a time.  That way if something bothers him he will be able to pinpoint it better.   I would recommend talking to a nutrionist if you can. 

Another book that might help is one called Breaking the Vicious Cycle. 

Good luck and I hope your son improves soon.

 Reply posted for momonamission.

Hi, I am 26 years old and I have had Crohn's for 5 years.  I think th reason the doctors will not tell you anything about diet is because it is so different for everyone.  I think the best way for your son to come up with a diet for himself is to keep a log of what he eats and how it affects him (based off types and amount).  Once he can see the difference, he will know what he can and can't handle.  The log really helped me.  I was able to curve the effects of some food, for example, I found that if I eat one scoop of ice cream it did not cause any problems but if i had one and a half I would begin to cramp.  I think in general, he may want to stay away from food that are hard to break down like corn, fiber, lettuce, and sweets.

 Reply posted for elle.

Thanks Elle, I have that book and was wondering if there is a little less complicated diet for a freshman in collage. I have been reading alot about not drinking anything with your meals. Also different things that you are not supposed to eat together. It did not give me the foods but refered me to buying some book. I have so many that maybe some of you know if thats the way to go. Every Doctor we have ever seen never tells us that a diet is the way to go. It's been 8 years now and were ready for some change. My son always tells me that things happen for a reason. I guess he knows more than me. Thanks Elle hope your feeling good today....

 Reply posted for momonamission.

I am so sorry your son has not gone into remission.  You did not say how old he was.  I also have Crohns.  You asked about a diet.  I have a book called The Makers Diet.  It is about a man w/Crohns.  He has an inspirational story in the beginning.  I have never really followed the diet except for the part about no pork or shellfish.  I really loved ham & lobster too...

This disease is not kind (for lack of a better word).  Although it is easier for me to suffer with Crohns than to have watch one of my child suffer with it.  As a Mother my heart goes out to you and all the other parents with children that have IBD.