Guess I am going to be selflish and take this post to vent in hopes that it will turn my attitude around. I have always felt that blogs should be a positive experience where you help make someone's day just a little brighter. If you feel the same... please skip the rest of the this post :)
In a previous post I shared how my daughter was diagnoised with Crohn's and was being treated with remicade. Well after a few months, she developed antibodies and it stopped working. So on to Humira. Both of these medications supress the immune system, which they believe is the culprit for attacking the intestines and causing Crohn's. It appears after several months that the Humira may have worn out its usefulness also. I cannot describe the feeling you get watching your daughter waste away no matter how much food she eats. I hear on a daily basis, "mom, I am so hungry" as she eats another meal. I think most mothers feel successful if they provide a clean warm house, clean clothes, love and can put their kids to bed knowing their tummies were full with a good meal. Isn't there a reason someone came up with the term "comfort food". But no matter what you do or feed her, she keeps losing weight.
So I have studied, researched, read and the more I find out, the more confusing it gets. What "might" work for one person, doesn't help another. Diets, medications, supplements, accupuncture. We have been "trying" the Specific Carbohydrate Diet for almost a week now and so far haven't found a lot of relief. Anything! I will take ANY indication we are on the right track. No wheat, no dairy, no sugar, no fiber, no potatoes, no rice, no gluten. It leaves protein (which some people still have problems with), eggs (which some people still have problems with), fruit (which some people still have problems with), some veggies (which some people still have problems with). As you can see, it is kind of tough to sort it all out. What to eat, how to fix it, how do you feed the rest of your family while following this diet for one? I find my attitude about food becoming negative. Reading the ingredient labels of things I would normally bring home has me calling white bread "death in a bag". Running to any number or stores looking for bacon without nitrates or sugar. Spending hours in a health food store only to find that a lot of the stuff isn't actually that healthy.
I told my daughter about another diet that has found some success... the enteral diet which is a liquid diet for 4-8 weeks. Then you slowly add foods back in. I could see the frustration in her eyes and her voice when she said she wasn't sure she could do that.
I feel angry and frustrated. Some claim that people get Crohn's from eating unhealthy processed foods. I have always felt that my family ate better than most. I fixed most meals from scratch, we eat very little processed foods (except for an occasional pizza). Others say it is caused by a bacteria in the meat we eat, but we raise our own beef. I keep asking myself, where did we go wrong for this to happen. And what I wouldn't do for things to just go back to normal. I want people to stop asking me to do things for them, because my daughter is starving to death and nothing you need done is more important than helping her.
Thank you for letting me vent. Not sure I feel better, but I know that I am not alone. There are many others who are dealing with this also and I know that my Heavenly Father is there watching and comforting. I just pray that we will be guided to an answer on how best to help our daughter.