New Diagnosis for my son

[jenstaci]

Hello! My 9 year old son was diagnosed with pancolitis Crohn's. He has Crohn's from his esophagus all the way to his stomach then through small and large Intestines, they found strictures in the illium and granules as well. This all started with what we thought was a bad stomach bug! He is on predizone, zantac, iron from being anemic and Flagyl. I know we have a long hard road ahead of us. We have cried for 4 days straight. I guess I would like to know what we can do to help him? Diet? supplements? Any advice would be greatly appreciated! Thanks so much!
Micah's Mom!

 

[Aussie]

Hi Micah's mum, it sounds like quite extensive Crohn's, so it would be better to be quite aggressive in the early stages to get Micah into remission.

Firstly, upper GI Crohns (ie. In stomach or early small bowel) requires a PPI (proton pump inhibitor) rather than just Zantac.

Also, Micah should be on good maintenance therapy, either thiopurine (imuran or purinethol) or biologic therapy (infliximab or humira), to control the disease after the prednisone gets him into remission. Apart from prednisone, exclusive enteral nutrition can also get children into remission without the risks of prednisone, which includes stunting growth.

Given Micah has strictures (narrowings) of his small bowel, he can occasionally get obstructive symptoms when food gets stuck for periods of time - watch for bloating and severe crampy abdominal pain with occasional vomiting if really bad, usually after meals. Changing the diet can help with obstructive symptoms, go for a "stricture" diet, although if active disease still present, most effective would be exclusive enteral nutrition.

Good luck.

 

[Angrybird]

Hello and welcome to the forum.

How long has Micah been on the meds? Has there been any improvement for him? i was also thinking about enteral nutrition as this has shown to have some really good results in youngsters. Also please do check out our parents forum so you can have a chat with the mums and dads here: http://www.crohnsforum.com/forumdisplay.php?f=49.

With regards to the strictures have the docs said whether this is down to scar tissue or inflammation?

Sending lots of hugs and best wishes.

AB
xx

 

[Johnnysmom]

My son had crohn's all the way through his digestive tract too upon diagnosis last October. His worst area was in his stomach. I agree with Aussie about the PPI, Johnny was on one until a month after he finished his Prednisone. The Pred is hard on the stomach and healing needs to take place. He is off them now and his stomach is much better. Also with such pervasive disease I really concentrated on getting in lots of calories with Johnny. I would make chicken with mash potatoes with butter, cream cheese, and whole milk to drink. I wanted him to have as many calories as possible to help with healing as he was severely under weight. When he was diagnosed he wasn't eating hardly at all so I wanted to retrain him to like food and want to eat. I didn't feel like there was anything we had to avoid. We are slowly trying to choose foods higher in protein, lower in sugar but I still let him have candy etc. It will be a life long process and eventually they will have to make their own decisions. He knows because of his meds and condition he has to drink more water, take in more calories etc but I didn't feel like he needed a restrictive diet because those foods didn't upset his stomach. I do think that this is very individual and some people will find they need to cut out certain foods or they suffer.

Also, because of stomach involvement avoid NSAIDs such as advil. They can cause a flare and are very hard on the stomach.

I cried for about 2 weeks straight but we are coming up on our one year mark and things are so much better. Johnny has been in remission now for 8 months and is back to our healthy happy boy. There are still bumps in the road but it is so much easier now that we have had these few months of experience under our belts.

((((Hugs))))))

Tiffany

 

[jenstaci]

Micah is now on imuran and asocol along with his prednisone and iron. We go back Thursday to the GI doc to get his levels checked to see where we are on things! Hopefully we can start backing down on the steroids, we was diagnosed Wed Sept 5th and started meds Thursday the 6th, so he has been on them for 2 weeks. He looks and feels so much better! Im just wondering how much of this is Steroid related and what it is going to look like when he gets off of them! But such a huge improvement in 2 weeks!!

 

[David]

I'm glad to hear Micah is improving I'm also pleased to hear they have started him on Imuran. However, I agree with Aussie and Angrybird. I would strongly suggest researching enteral nutrition and discussing it with your doctors. I say this because when you go off the prednisone there is going to be a lapse in treatment while the Imuran slowly begins to work which can literally take months. You do not want that lapse and no, Asacol is not enough. Total enteral nutrition can not only help get him to remission but it can maintain it and has a variety of beneficial affects on his nutritional status. It's just plain fantastic when it comes to a treatment for kids.

We're here for you. And if you haven't yet, be sure to connect with other parents in our Parent's of Kids with IBD section like Angrybird suggested. They're an amazing group of people.