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Crohn's and no hope

Hello to all that have the time to care to read this. I was diagnosed with Crohn's in 2001. I have been hospitalized 2x for severe blockage due to inflamation. They misdiagnosed me with irritable bowel syndrom since I was younger like 13 years old. So they told me to eat fiber and that is the opposite of what you need for crohns so as you can imagine among other things I was just making my symptoms worse. When rushed to the ER with a temp of 104 degrees F, they took a CT scan and diagnosed me and I was admitted into the hospital. They first put me on tons of Prednisone(which is an ugly drug), and then Pentasa. Well the Pentasa wouldn't break down or digest in my intestines so it came out the way it went in...sorry but its true. So then they started me on Remicade infusions. This is a biological drug that supresses your immune system due to the fact that Crohn's is an auto-immune disease. I have regular bowel movements(maybe some constipation if any), but I am so sick everyday. I have nausea from the time I wake up until I have taken at least 3 8mg zofran pills. I can't keep anything down when I do have an appetite so I know that I am malnutritioned. I am losing weight again and my GI wants to perform an endoscopy but I am going to another doctor to get a second opinion on how to treat/manage my disease and the nausea and pain that comes along with it because my doctors are not willing to prescribe me pain meds due to the fact that they say it will constipate me but I have been prescribed them before and I just had to take a stool softener with them and I felt so much better when I was relieving the pain. I guess, my question is, is there anyone out there that this is happening to? Why am I sooo nauseaus? What can I do about my pain and dealing with the doctors point of view? Also, if anyone is on Remicade how is it working for you? Does it make you naueseas? How does it affect you in your daily quality of life. My quality of life now is almost to nothing. I am a shut in that stays at home where all my necessites are. I hardly ever plan anything fun because of the unexpected episodes. I have my Minnesota Teaching Lisence and harldy can use it due to the fact I have a hard job making it to work cause Im sick all the time and I have to stay on medical asistance to afford the Remicade so I can't take a full-time position without medical insurance. One Remicade infusion is about $8,000 every two months for me. Along with my other medications, I would be out of luck and not able to have my meds due to the cost. That is why I work part time...I need to find that job with insurance to support me and my disease. I am very frustrated...not working is hard...I live in Public Housing, am receiving asistance (MA) and food support. I never thought in my life would I have to be the one recieving the help...I always wanted to help others as why I became a teacher. I am very desperate for a solution so if anyone can give me advice or information please I beg of you...you have read this thus far...could you please send a response...I feel as if everyone around me doesn't believe how painful and inconvenient it is for a person's life. Thanks again. I am new at this site so if you can e-mail me here or if I cant figure it out my e-mail is chesaschult@gmail.com I am hoping to hear some good news, I will be praying. Thanks guys!

CHESA
 
While I can't give you any advice, (I've just now started having severe symptoms of Chron's within the last 6 months) I want you to know that I'll be thinking and praying for you!! I know that psychological ease and rest isn't easy with this disease, but remember that you're definitely not alone! Keep your chin up!
 

David

Co-Founder
Location
Naples, Florida
Hi Chesa and welcome. I'm sorry to hear you're having so much trouble with your nausea :( I wonder if it is a side effect of your medications or maybe diet related.

Regarding your Remicade questions, might I suggest you take a look at our Remicade support forum as folks there will likely be able to answer your questions.

I wish you well. See you around the forum :)
 

xJillx

Your Story Forum Monitor
Welcome Chesa! I am so sad to read this. Many people have had a great response to Remicade. But it doesn't work for everyone. So, if it isn't doing the trick, you need to speak up to your doctor. It may not be for you, and you need to find what is.

I really hope you can find the right treatment soon. If you start feeling better, hopefully you can get back to work. Crossing my fingers for you!
 
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