My son was diagnosed 10 months ago

[andresmom]

Hello, I am new to this site, I have been looking for a way to communicate with other parents about my sons Crohn's disease. He is 15 now, he was diagnosed last september after 7 months of bouncing around the health care system, from doctor to doctor before we found out what was happening to him. He was hard to diagnose because he says he rarely has any pain or urgency to go to the bathroom, but he has been diagnosed with moderate to severe Crohn's.
Right now he is on NG tube feeding for the second time around, as well as Imuran, we achieved remission the first time but the flare quickly came back once we stopped. We have chosen to do ng feeds again because he (and I) are dead set against steriods. I'm just scared because He doesn't want to wear the ng tube to school again (he starts high school in sept) and I can't say I blame him. Are there any other options? Our GI doctor has told us, NG feeds (which are less likely to work after the first round) or steriods. Those are the only options we have been given. How can I keep him in remission once he gets there? We were givin no special diet, just low fibre because he has signifigant strictures. I feel like I contributed to this second flare because I should have done more research on how to feed him. But the hospital said there is no special diet and everyone is different anyway. I hate this disese everyones story is different, everytime I ask questions to the doctor he basically says "We don't know" they don't know why, they don't know how, they don't know when. It's so frustrating.
Any help or comments will be helpful, thank you
Andre's mom

 

[Jmrogers4]

Welcome andresmom,
Could he do the NG tube feeds overnight. I know a few kiddos who have done that. Put the tube in at night and pull it out in the morning. That way he wouldn't have to wear to school. I believe Tesscorm's son did that but I know he is not the only one. There have also been a few who have chosen to drink the formula - my son included. He quickly got used to the taste.
If he is flaring as soon as you pull the EEN it may be that the Imuran is not enough to hold his disease at bay.
There are quite a few diets SCD, Paleo, Clean that some have seen some improvement of symptoms on check out the diet and fitness section
http://www.crohnsforum.com/forumdisplay.php?f=268
http://www.crohnsforum.com/forumdisplay.php?f=17
Unfortunately some of it is trial and error of what will work for your son and what may set him off. For example my hubby can not do red sauce causes problems every time but my son is not bothered by it at all. So I would suggest keeping a food diary.
Do a lot of reading and we are here for questions usually somebody has been there done that and able to give their point of view at least.

 

[Tesscorm]

Hi andresmom,

I'm so sorry your son was diagnosed with crohns. But, I am glad you've found this forum. You will find lots of very helpful and supportive members and parents here. :ghug:

My son was diagnosed at 16. He did exclusive EN (enteral nutrition) through an NG tube overnight. So, for six weeks, his only nutrition came from the formula and each night he inserted the tube and removed it in the morning. He truly had very little trouble learning to do this (but, everyone's different... it is more difficult for some). During the day, he was allowed only clear fluids - gatorade, freezies, popsicles, jello and broth. He would take broth for lunch at school and I arranged for the school to keep a supply of freezies on hand for him. After the six weeks, we reintroduced foods and he continued with overnight feeds (at 1/2 dose, 5 nights/wk) for approx. 18 months.

Has your son been on imuran since his first try with EN? Or did he have no maintenance med (or EN) until this second flare? If he's just started with imuran, I believe it can take up to three months to reach therapeutic levels?? Please look through the treatment section for both Enteral Nutrition and Imuran to get more information. Also look on the forum Wiki for information on LOTS of subjects!

As Jacqui said, some of it is trial and error. It may just take a bit of time to find what works for your son.

Don't feel responsible re your son's diet. Again, everyone responds differently... my son has no issues with any food but there are many here who find that certain food bothers them. There is no one right diet.

Have a look through the forums and feel free to ask questions or simply for some support from others who have been there! :ghug:

 

[CrohnsKidMom]

Welcome to the forum, fellow Nova Scotian! So sorry to hear of your son's diagnosis. My 8 yr old son was dx'd in March. Our GI gave us 2 options-Prednisone for 3 mths or EEN with NG tube for 3 mths. He recommended the EEN over the Prednisone, and maybe had my son been younger, or older, we'd have gone that route. We didn't feel emotionally ready to do the NG tube. As you'll read, some others have done the EEN without the tube, but our GI wouldn't go for that. So Prednisone it was. No special diet for my son either, other than low residue/fibre while flaring. We just try to eat healthy with foods that are fairly easily digestible. Lactose bothers him, so he drinks lactose-free milk, or takes "lacteeze" pills prior to eating dairy. As Tesscorm said, Imuran takes at least 3 mths to kick in. Has it reached therapuetic levels? Maybe he needs another med to go along with it, or maybe it's just not working for him? I don't know. We're still learning too, but there are others on this forum with a wealth of knowledge, so visit often. Take care and I hope your son is feeling better soon.