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12-21-2010, 12:47 PM   #1
xoxava
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Location: North Carolina
breaking point

ok so for now i am in tears as i write this because i do not know what to do anymore. ive been going through this since june and still nothing has changed. ive been on prednisone, asacol, apriso and now lialda. my primary care just loads me up with pain medications as well as my doctor for my kidney stones. i cant sleep. i dont want to do anything. literally i want to stay in bed all day and never go out. when i do go out i make sure its somewhere i know theres a bathroom and i spend most my time in there!!!! ive lost weight. and i cant eat anything. when i do eat, i always vomit. so my doctor wants to do an xray to see how my stomach empties stuff and if there is a blockage or ulcer in the way. i am so fed up with living like this. its always "here try this med.. and see me in 4 weeks" i understand it takes awhile to find the correct meds but its just getting a little ridiculous. im 19 years old and i feel like an old granny that just wants to lay around all day. my stomach is constantly hurting. i wake in the middle of the night with intense pains. im still going to bathroom anywhere from 15-30 times a day! ive had blood come and go, both in the toliet and on tissue. its extremely painful to go. now ive come to eat two-five bites of my meal and thats it or else i will vomit it all up. i hate that anyone has to go through this. i just want something to be done not just for me but for all of us suffering.

ok im done now. i hope everyone has a flare free holiday!
12-21-2010, 12:52 PM   #2
Rebecca85
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Sounds like you need to step up treatment- apriso, lialda and Asacol are all forms of mesalazine? Which is a pretty mild med. So maybe it's time to try azathioprine or 6mp (immune suppressors) or Humira or Remicade (biologics). In the meantime, can you keep liquids down? Maybe go on an Ensure diet for a but?

Hope you find relief soon!
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Crohn's in the terminal ileum, dxed Jun '10

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12-21-2010, 05:39 PM   #3
Cat-a-Tonic
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Xo, I'm so sorry to hear you sound so down. My doctor does something similar, "take these meds and I'll see you in a few months." But, he also encourages me to call him whenever I have questions or am not doing well - as he put it, "never hesitate to call, a doctor visit costs money but a phone call to the doctor is free!" Have you been calling your doc to let them know that your meds aren't working so well? Even if you don't have an appointment for awhile, surely they could give you advice or adjust your meds based on a phone call. If you're doing really badly they may even be able to bump up your appointment to be sooner.

When is your xray? I presume it's a barium series of xrays? Are they planning on doing the pill cam or anything like that? I know that the pill cam can see how quickly the stomach empties, so that may be helpful if the xrays don't reveal anything. Have you thought about doing a liquid (Ensure or Boost) diet for awhile? That may help you if solid foods cause vomiting aftre 5 bites. I really hope you get some relief soon and start feeling better. Good luck and I hope you have happy holidays.
12-21-2010, 07:36 PM   #4
ameslouise
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Xo, you sound so sad! It must be hard to be so young and dealing with all this when you should be out having the time of your life!

I agree with Cat - call your doc! They rely on us to let them know what;s going on, and you shouldn't have to suffer for four weeks in between appts. I hope you have a good doc that is responsive, and if you don't - find a new one!!

Good luck - keep your chin up -Amy
12-21-2010, 08:37 PM   #5
xoxava
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Thanks for the encouragement and support its been a tough road. Ill be sure to check in with my doc. And as for the xray I have no details on that yet. Thanks you guys
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