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Old 05-28-2009, 01:18 PM   #1
tokmom
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Crohns
Does anyone here suffer from Crohns? Dh's cousin has been diagnosed in his mid twenties. His insurance only pays for so much and his uncle helps him with the rest of the medication bills.
What nobody seems to understand and nobody has asked, but this young man needs to go in every other month for some sort of transfusion? Does anyone know what this would be? It runs about 4000 dollars and the amount uncle pays is 800. He's on a fixed income and he's getting to the point he cant afford it. The young man hasn't asked or doesn't understand, it's hard to say. My guess is, if it was coming out of his own pocket he's sure be asking questions!

TIA!
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Old 05-28-2009, 01:54 PM   #2
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As a life-long IBS sufferer I am quite familiar with Crohn's as the symptoms are nearly identical and one is often mistaken for the other.

As far as I know, transfusions aren't a normal course of treatment for Crohn's. It's normally treated with a combination of drugs and diet, and ultimately surgery to remove the affected section of intestine.

Here is the WebMD page regarding the treatment for Chrohn's. You'll note that transfusions aren't mentioned. That's something I have never heard of with regard to Crohn's.
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Old 05-28-2009, 03:17 PM   #3
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Oops.. Mason forgot the link.
http://www.webmd.com/ibd-crohns-dise...se/default.htm
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Old 05-28-2009, 04:06 PM   #4
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Originally Posted by Jan in CA View Post
Oops.. Mason forgot the link.
http://www.webmd.com/ibd-crohns-dise...se/default.htm
Yeah I did, that's what happens when the phone rings while posting
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Old 05-28-2009, 09:13 PM   #5
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YUP - I've got it. Diagnosed at 23, 5'11" tall and 99lbs.

When you say transfusions do you mean infusions? A blood transfusion for Crohn's is nothing I've ever heard of. However, IV drug infusions are pretty common. The popular one I wanted was Remicaid (there is another whose name escapes me)..maybe Enbral. They are actually rheumatoid arthritis drugs - big time anti-inflammatories. I went through my bad times before they came on the market so I took lots of different meds and spent almost 2 yrs on prednisone. I am not recommending my course of treatment as everyone is different. I stayed on the meds and did diet modification etc and now I am off all meds, using probiotics along with diet modification and do great. Granted, my bowel habits are not that of a "normal" person, but I work full time am married and will raise children without the side effects of drugs.

IMHO a great book for me was Eating Right for a Bad Gut.

Good website www.ccfa.org, the gastroenterologist should be able to provide you with a free one yr membership to get their magazine and updates and drug trials and studies (free meds).

I am more than happy to PM you and give you as much info as you would like. I remember all to well what I went through getting diagnosed and then the 4 yrs I spent getting healthier.

Last edited by vaknitter : 05-28-2009 at 09:17 PM. Reason: clarification
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Old 05-28-2009, 10:14 PM   #6
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Thanks for the links. I will pass them on.
As for transfusions, it's some sort of medication. He goes every other month.
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Old 05-28-2009, 10:20 PM   #7
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I might take you up on the pm if I can find out more from dh's uncle. I'm trying to help him not go bankrupt!
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Old 05-29-2009, 10:45 AM   #8
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My husband was diagnosed with Crohn's when we were dating...he was 23.

For years, he took Prednisone when he had flare-ups, but being on this drug long-term is very bad for a body.

Remecaid was a miracle drug for him. When we lived in South Florida, our HMO paid the entire bill, so we didn't have a clue as to the cost.

Unfortunately, when we moved to north FL and our insurance changed, we didn't know we would have to pay 20%. What a shock! He'd had two treatments before the bills started rolling in, and it took us a year to pay them off.

We made the decision not to continue with the treatments because of the cost. We just couldn't run ourselves into the ground while still having a lot of other financial obligations.

He now takes Pentasa as a "maintenance" drug. It has not had any side affects and seems to keep the Crohn's in check. It's been years since my dh has had a flare-up that required hospitilization.

Oh, and one other thing. Surgery does not cure Crohn's. The disease will usually flare up in one area of the intestines. If you cut that section out, Crohn's will usually return in a different area. My dh has always refused surgery. He figures he'll just continue to suffer from the other stuff...always having to go to the bathroom, stomach aches...

My heart goes out to your dh's cousin. Crohn's is not a fun disease to live with.

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Old 05-29-2009, 07:01 PM   #9
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Originally Posted by tokmom View Post
As for transfusions, it's some sort of medication. He goes every other month.
Ah, that's an infusion not a transfusion. A transfusion is when they replace your blood with new blood, or add fresh blood to yours.
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Old 05-29-2009, 07:02 PM   #10
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Originally Posted by auburnchick View Post
Surgery does not cure Crohn's. The disease will usually flare up in one area of the intestines. If you cut that section out, Crohn's will usually return in a different area.

Very true, surgery is a treatment, not a cure. Sadly, there is currently no cure.
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