Mothers of Children with Crohns Community Group
This group is for Moms who have kids with Crohn's disease. Hopefully we can help support each other.
Hello to you all, I have been frantically researching this darn awful mean disease and have so many thoughts flying around my head that I had to put them down into folders and books, the pukka pad is now my favourite thing!
My son is now back onto steroids for the second time since March, the inflammation just won't seem to go down, he is still stuck on 20mg but doesn't have any pain now and can actually live his life which is just wonderful to see. Its awful as I know the damage the steroids are doing outweighs this period of calm but yet I still am enjoying just sitting and relaxing, and I know that in itself is selfish.
I want to supplement him as an individual as well as the western medication, I am thinking of getting a vitamin and mineral test done on him to check for deficiancies, thinking of introducing yoga to his week around the football, and to raise some funds to attend a sophrology session to try to help him get off steriods quicker and to give him tools to manage the pain etc.
I am also on the brink of getting an allotment, and am thinking of again raising funds to put myself on a nutricion course to help with understanding how the body works and what nutrients etc are required.
I also wonder if I should work out a weekly vitamin and mineral requirement and see if I can find within the foods that he can tolerate a way of getting the allowance in? or am I totally barking up the wrong tree?
I just feel abit lost at the minute, my family are being very judgemental about this disease and I have lost alot of people because of it, I just seem to have lost tolerance with things and just tell people to go and do one!
I just find this disease and the fact that my son has it, just so hard to deal with. I know I would deal with it better if I had it......which is awful in itself as this disease just shouldn't exist.....if we can put a man on the moon and create a space station, seriously how can we not cure this disease?
I am sorry if i have rambled on, but any help or suggestions would be so gratefully received.
Thank you
Alex
My son is now back onto steroids for the second time since March, the inflammation just won't seem to go down, he is still stuck on 20mg but doesn't have any pain now and can actually live his life which is just wonderful to see. Its awful as I know the damage the steroids are doing outweighs this period of calm but yet I still am enjoying just sitting and relaxing, and I know that in itself is selfish.
I want to supplement him as an individual as well as the western medication, I am thinking of getting a vitamin and mineral test done on him to check for deficiancies, thinking of introducing yoga to his week around the football, and to raise some funds to attend a sophrology session to try to help him get off steriods quicker and to give him tools to manage the pain etc.
I am also on the brink of getting an allotment, and am thinking of again raising funds to put myself on a nutricion course to help with understanding how the body works and what nutrients etc are required.
I also wonder if I should work out a weekly vitamin and mineral requirement and see if I can find within the foods that he can tolerate a way of getting the allowance in? or am I totally barking up the wrong tree?
I just feel abit lost at the minute, my family are being very judgemental about this disease and I have lost alot of people because of it, I just seem to have lost tolerance with things and just tell people to go and do one!
I just find this disease and the fact that my son has it, just so hard to deal with. I know I would deal with it better if I had it......which is awful in itself as this disease just shouldn't exist.....if we can put a man on the moon and create a space station, seriously how can we not cure this disease?
I am sorry if i have rambled on, but any help or suggestions would be so gratefully received.
Thank you
Alex
I would say, do your best to make sure your son gets the most "bang for his food buck" as you can, but keep in mind what he likes and will eat...because there will be plenty of days when he won't eat much at all. You might find that a good multivitamin will keep him in balance. Your GI doc should be testing for vitamin and mineral deficiencies with his regular blood work.
As with any parenting problem, you are going to have to pick you battles. If you feel like a nutrition class will empower you, go for it! Remember to save some energy for yourself and take care of yourself too.
It is difficult for other family members (and friends) to really understand our plight, especially if this is the first case of Crohn's/Colitis in the family. Be patient with them. They are not living it day to day, like we are. They can't possibly know all of the small and large things we do everyday to combat the disease and to address our children's pain.
It sounds like you are doing a great job of being your son's mom/advocate! We're here for encouragement when you need it!.
Take care.
Cheryl
I hope you get to have a restful pain free New Years Eve and heres to a 2013 that provides balance....
Alex