Not every post needs to be happy - dealing with Crohn's

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.


Elisabeth said...

We may never understand why our children are given the challenges they are. It is frustrating not to be able to help them or even know how too. I can relate sometimes with Ian being on the Autism Spectrum…You and Courtney are being watched over…keep the faith and feel free to vent once in awhile!!! You are in our prayers ;0)

Jennette said...

Hi, I was given your blog address from Shannon Jex - she thought we might be able to chat, as I have two young daughters with Crohn's. You can check out my blog at www.jworton.blogspot.com, and please feel free to email me at ANY time (jworton@gmail.com). I'd love to hear you vent, discuss treatment, etc. I can't tell you how many times I have wondered why my two little girls have this problem while no one else in the family does - clearly it is not just what we eat, although I can see how that can contribute. I know the enteral diet is horribly frustrating, but there are so many studies that show it helps. It's the main way they treat Crohn's in Europe. My middle daughter was only 8 months when she was diagnosed, so it was easy for her - we just switched her to this special formula and she slowly started gaining weight (also w/ help of meds). I have some left over if you'd like to give it a try. We also mixed it in with applesauce and other pureed baby foods and fed it to her that way. It might be something worth trying - if it gets too bad for her they may have to put in a feeding tube, which would be worse than a liquid diet (in my opinion that is).

Anyway, I just wanted to drop a line and say I totally understand. It's maddening and heart-breaking, and you wish the rest of the world would stop so you could take care of your baby. I know when I hear other moms complain about their kids' teething or colds or ear infections, it's frustrating - really, if that's the worst you've got, count your blessings! Hang in there. It took a LONG time to get my girls' under control, and we still have flares here and there. Not as bad as it was, but definitely not perfect, and it takes a LOT of effort and diligence. PLEASE contact me at any time! I feel your pain!

Sweet Prertty said...

Of course, being away for two weeks is an impermanent bother, yet you will have your affirmation in a small amount of the time.