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Crohn's Disease
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Posted 6/25/2012 11:54 PM (GMT 0)
Hi. I was just diagnosed last week and I am very scared and nervous as to what to expect with this disease. Is there anyone out there who can help me understand this disease? confused
Posted 6/26/2012 12:01 AM (GMT 0)
there are lots of us here. Welcome to the forum!

Can you tell us what's going on with you? Crohn's is a very individual experience. It would help us if we knew more about you.
Posted 6/26/2012 12:09 AM (GMT 0)
28 years old. Crohn's ilities with possible ulcerative colitis. Taking 30mg of prednisone per day. Have a perscription for 1000mg of Pentasa daily but cannot afford to get it filled.
Posted 6/26/2012 1:40 AM (GMT 0)
If you do not have prescription coverage, contact Shire, the makers of Pentasa and apply for assistance...depending on your income you can get a discount, or even get it for free. Welcome to the forum. I suggest that you go to the Crohn's/colitis website at ccfa.org for lots of good info.
Posted 6/26/2012 2:19 AM (GMT 0)
I was also recently diagnosed. It's been about 2 months since I have been officially diagnosed and about 4 months trying to figure out that it was Crohn's. I just finished a round of Prednizone along with Pentasa. Being recently diagnosed at 20 years old I am also fairly confused about what Crohn's is, the symptoms, what to eat, etc. That's why I'm here! :)
Posted 6/26/2012 2:36 AM (GMT 0)
madysonalliah, sorry to hear about the ileitis. The prednisone should help you feel better, but 30 mg/day might not be enough. Most of us start at 40 mg/day or even more, and then start tapering down from there once we feel better. And the dose of Pentasa seems too little. A therapeutic dose would be 3000 or 4000 mg/day. I agree with gumby about checking with the company to see if they have any assistance programs.

JessPurce, welcome to you too! Please start your own thread and introduce yourself.
Posted 6/26/2012 2:43 AM (GMT 0)
Yes the Pentasa might need to be upped. I was taking 6 pills a day at 500 mg each.. So 3000 mg (3 grams)
Posted 6/26/2012 6:30 AM (GMT 0)
mady,

I know it's all very overwhelming and that you're terrified, (we've all been there) (((((HUGS))))) it's a lot to take in and you will definitely learn as time goes by...

When your doc said colitis he likely meant CD is affecting your colon where ulcerative colitis typically hangs out, although there are some patients with both CD and UC, it's quite rare (keeping fingers crossed that you're not dealing with both).

The thing with CD is, it can affect your entire GI tract from mouth to anus, UC is basically limited to your colon/rectum, but meds used to treat UC are also used to treat crohn's colitis as well (meds that target inflammation in the colon) and if at some point your CD affects your rectum (as it can commonly with having UC) then rectal meds would be used (just as they are for UCers).

As far as meds go, can your doc give you some samples, or could you find an organization or something that helps people with expensive meds? Also, some people in the US use a Canadian online pharmacy as they find it quite a bit cheaper...see if your doc can lead you in the right direction to help you get your meds affordably.

Best of luck and feel better soon!

It's a lot to take in, but I thought for now I'd give you a bit of clarification between the two different IBD's (UC and CD).
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