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Hi my name is Amanda I am 24 yrs old I have been diagnosed since 2005 I have tried many different treatments and nothing works so they have put me in a new clinical research for abatacept I have takin one infusion no change yet I just cannot find a way to learn to live the rest of my life this way I cant do anything or go any where I am always tired and sick the chrons has givin me kidney stones and rhumetoid arthritis I am on prednison and sulfar along with other medicines I have been put off of work and sent to fight for disability I cannot be the mother I need to be or the wife my husband needs I am so depressed and feel like I just need to scream I need someone to talk to who understands what I am going through I cant do this alone any more I want my life back can any one help thanks Amanda

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 Reply posted for amanda24.

amanda,i am a mom of a chrons patient. he has gone through *** ! he once weighed 215 pounds and now weighs 156. he has been on almost every medication known to man for this, the only one that really helped was remicade.  he was put on that the first year he was dx, but his health ins. would not cover it, and the infusions were too costly, the gi dr he treated with wouldn't listen to him.he got very grumpy and hateful. he was introduced to a very sweet young lady that happened to work for a hospital in the billing department. she started working on a charity account for him and was finally able to get him to a new gi group. they put him on humeria, which was provided by patient services, but it didn't work.  he would get extremly sick after the injection.  he lost his job (x 2) and when he hit below rock bottom, his girlfrined went to a crohn's meeting and found that remicade could be obtained for free if we could find an infusion center to do it for self pay, because he still doesn't have a job.  to make a long story short he finally had his first infusion this past monday 6-23, and with the good lord on our side our prayers have been answered, because he is full of life and ready to go 4 wheeling.  so, i know it is hard to be a wife, because he has had to have rectal surgery this past january (with no insurance) and he still has a drain in his rectum, but he is on the road to some sort of recovery.  he goes for his next dose on 7-7, and he has them scheduled clear up to 9-29 just 4 days before his wedding.  so what i'm saying is maybe your husband or family should go to a crohn's meeting and maybe he will see that this isn't put on. that your blood count will go very very low, where you might need a transfusion.  but going to work is out of the question.

pray alot, and don't stop trying, because there are several medications out there, and one will help!!

good luck!

a mom

 Reply posted for amanda24.

Hi Amanda. I am so with you with everything.. I am a mom as well not a wife yet but hopefully soon.  Iam fighting with disiblity as well.  It has been almost a year since I have appplied and I got denied and I filed an appeal and I am waiting on that.   I have a dr note stating I can't work.  And I am thinking to myself as well why can't they just approve it... I am tired and groggy everyday and also in pain.  I am here for you as well as everyone else to help.  Keep your chin up  I am trying to my self.

 Reply posted for amanda24.

Hi Amanda,

I understand exactly how you are feeling,  has your doctor discussed other treatments for your other than Prednisone and Sulfar drugs, as there are some really good ones out there.  I was on both of these meds for 15years and they have caused serious damage to my organs,  I am now on 6mp and Pentassa and feeling much better, my flare up are minor as I am in the middle of one now.  I understand how you feel about not being able to be the mom and wife that you want to be, also the disability fight is very draining on everyone.  It took me two years to get approved.  I have been back working now for 10years and have my good and bad days.  things will start to look up, you have lots of friends here.  You and your family are in my prayers.

Littlestar

 Reply posted for amanda24.

Amanda,

I think you answered my post.?  I think it is hard to find it within ourselves to deal with all the pain, self loathing, etc.  You need to give yourself a break and think of all the things you do accomplish. Your child will love you even if you spend all your time in bed.   Hopefully your husband is good to you.  This is not your fault.  I was sick when my kids were growing up and they are great.  They each have three kids.  So now I worry about giving my grandkids what they deserve.   Sometimes I think the mediation makes us sicker than the disease.  For the first 4 years I got along really well going to a nutritionist (?)  Have you done anything about your diet?  Sorry to blather on so long.  Take deep breaths and smile.  

 Reply posted for amanda24.

i hear ya. i feel terrible when i'm laying around in pain and i'm not doing anything for my husband or our kitten. the same thing happens at work (i teach) and my kids wonder where i am or what's going on. it sucks, but it could always be worse: i try to remind myself of that. sooner or later you'll find something that works for you!