Our story, big thanks and 1 question

Hi all, I have been here many times over the past two years or so, since my son first fell ill. It seemed as though every time I would look up symptoms he was suffering from, I would be led here.

So first I would like to thank you all for sharing your experiences. I do not feel so alone in this battle.

Second is our diagnosis. My then 10 year old son was not feeling well. He would have the odd fever, was slightly paler than he should have been in the middle of summer, but then would seem fine again. He later would randomly throw up in the middle of dinner. It was never the same meal so it couldn't have been a food reaction. He then lost his appetite. After being told he just had a virus to many times a asked for further testing, they drew some blood while butchering him with the needle. Time went by and he kept getting sicker, the bloody stool then appeared and a lot of pain. I check the pain area and notice he has lost a ton of weight. To our family dr this time. She has no records of blood work from the hospital, does more. Next day he can't sit down, abscess. Back to hospital, wait 8 hrs to be told surgeon can't drain it till morning. Back in morning wait 6 more hours, drained. Family dr comes with blood work, recommended to Sick Kids. Appointment in 2 weeks with GI. Meantime I notice a tiny pinhole beside drainage/packing area. See surgeon ask if it is fistula he says no. all this within four months.

Jan. 2011 dx. Mod to severe Crohn's Disease with 4 fistula.
Now doing great and thank you again.

Third is a question. I have only really modified his and all of our diets be excluding milk. I am looking for a good substitute, we do not drink soy and use almond milk here and there but all the ones I've seen contain carrageenan which I believe is known to cause ulcers in the intestines. We are looking for something tasty to have on cereal that won't make matters worse for my son but that the kids will like the taste of.

I hope everyone is feeling well and wish you all a permanent cure and a happy holiday.

I am in Canada. Initially I thought lactose so we tried lactose free but didn't make any difference. Then tried just eliminating dairy altogether and noticed that we all felt better. It was so hard to stay away from all dairy as we love cheeses and yogurt, so eventually we caved except for drinking milk. My husband and I haven't drank the stuff for years but now the kids either. They still feel good and don't mind at all other than cereal.

(I feel sick at the thought of a glass of milk as I do not believe that there are any other species that continue there entire life drinking it and especially that of another animal.)

I've tried rice milk, soy milk, almond milk but then read up on carrageenan and now don't feel so good about it. Can anyone recommend an alternative to these or dry cereal? Does anybody know anything about potato milk and how it tastes or treats crohns?

Thanks so much we will definitely get the Silk brand the kids loved the taste and were disappointed when I took it away. Will pass on the goats milk though.
We spent many of our days at the hospital over the past 2 yrs, we've probably crossed paths. It really is a great hospital and our Ped.GI has been great. I can't thank them enough.
I really hope your girls ok, it can be such a hard thing to cope with.

Thanks again

If it's just for cereal, perhaps using lactose free milk isn't such a big deal. You might consider goat milk as well - the casein proteins are different than cow's milk and may be less bothersome.

Humans have been drinking milk from their herd animals for millenia.

My daughter was a big milk drinker before all of this. Me, never liked drinking milk. It was the hardest thing to give up. We tried almond, soy, goat, milk on the shelf (non refrigerated), everything possible. She now has managed to tolerate lactose free milk if it is mixed with Carnation Instant Breakfast or Boost powder. even the brand seemed to make a difference for her - Sealtest, not so goot - Natrel better to manage. Try different brands of the lactose free if Silk or some of the other things you try start to wain on you all. Good luck.

ihavefaith,

Since you're in Canada - take a moment and check out this link for The Grain Free Gourmet -http://www.grainfreegourmet.com/ or http://www.jkgourmet.com/ and look for her cookbooks.

Jodi has a recipe in her first book called the Grain Free Gourmet for making almond milk from scratch. I do this and use it all the time. It's pretty awesome especially when used over her Apple Spice Granola. Actually it's insane how good it is together.

I realize it's a bit of effort though - just thought it might help you. I know how frustrating it can be to cut out dairy. I tried a bunch of things till I ended up my own because I can adjust it for taste etc. After a while it gets down to a science and breakfast becomes awesome again.

Hope this helps some,

All the best,

Mark

PS - You may even be able to come across a copy in the library since you'd only be after it for one recipe. Also on the net there's a ton of resources on how to make it. Or even just go to Chapters, look at the book and write it down there. I doubt anyone would care at the store.