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Just diagnosed, scared & overwhelmed

T

TracyCharlie

Hello i am Tracy, a 50 year old housewife and just diagnosed with Crohn's Disease. We live in USA, South Carolina.
No 1 concern is my future health &n coping with this disease.
No 2. Concern is no health insurance & how to pay for medical care
My husband is on Social Security retirement ( $ 1,250. ) monthly.
May qualify for Medicaid. Does anyone know ???

I have had symptoms for last year. Had a Colonoscopy Dec 26th
Dr. said Crohn's Disease he took 3 biopsies. Follow up appointment Jan 9th.
This is a lot to deal with and a scary life changing event.
 
kad

kad

Hi Tracy,

Sorry that you believe this will change your future and the worries of bills. My husband and I are on social security, but have health insurance, and I would be worried too. But, this disease is pretty much livable if you change your diet and take care of yourself the best you can do. Unless surgery is required, and this doesn't happen aways you should be able to work at this disease without running to the doctor all the time. I have know idea what your symtoms are but, this disease is controlable with diet alone if you can mustard through the things you shouldn't eat. Sorry and that you are feeling so scared.
 
muppet

muppet

It's possible for some patients to moderate their Crohn's Disease with diet alone, but for a new sufferer with no experience with the disease, a maintenance medication of some kind is more or less mandatory.

Without insurance, the heavy hitter drugs like biologicals (Remicade, Humira) may realistically be out of your reach without some kind of assistance. Centocor (the maker of Remicade) does provide affordability plans for their meds, but I don't have the details of what the end costs look like, and that won't help with the infusion center costs. There are other drugs that are far cheaper. Some are considered less effective overall, but still work for many patients.

Do you know where your disease is in the bowel? What areas are inflamed?

I'd ask your doctor about whether 5-ASA drugs like Colazal or Lialda are appropriate for you. These meds can get expensive but in the case of Lialda at least, there is a manufacturer discount program that allows you to have your pills for as little as $10 per month (I think this figure goes up if you lack commercial insurance, to $50 per month). Lialda works very well for my CD but for others it may not help at all.

You can also ask your doctor about 6MP/Imuran, both of which are generally considered more effective than 5-ASA, and are relatively inexpensive, although I'm not sure of the exact cost for uninsured folks. I know we pay a very low copay on this one which with our insurance, generally indicates a much cheaper drug.

So, absolutely watch your diet as it will certainly keep the severity of your disease down and prevent more costly (to your budget and your health) flare ups and interventions, but it's a very good idea to take some sort of maintenance medication as well, which will keep you from some of the worst potential consequences of the disease and the subsequent hospitalizations and surgeries. It's worth looking at the diet subforum, which is here:

http://www.crohnsforum.com/forumdisplay.php?f=17

Personally, I use a low-residue (you can Google this and find lots of stuff), no-dairy diet, which works very well for me. I've been making a recent exception the no-dairy to have yogurt, which seems to help me a lot. I try to get a few different kinds of bacterial cultures at some local health/whole food stores. Seems to work for me.

Good luck to you, and keep coming back, as this forum is a fantastic source of information and advice.
 
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T

TracyCharlie

Thanks Muppet, your response is vary useful. It is becoming obvious and re assuring that I have been unduly alarmed with horror stories from un knowledgeable people. Glad your site is here.

Thanks so much
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

I think Muppet has already given some really helpful info med wise which I agree is a possibility. Diet wise it may also be worth asking your doc about enteral nutrition - I am not sure what the cost of this is if any but this has been shown to be successful in settling the tum down. I would also ask about getting your vitamin levels checked if at all possible as it is common with crohn's to suffer from deficiences in this area.

AB
xx
 
acheallova

acheallova

Hi Tracy,
Glad you're here, welcome. There is a lot of great information on here and the best of people. So much help and a feeling of support and security, as we are not alone as a sufferer.
You are borderline age for retirement but there is help! Besides the less expensive medication regimes, there are quite a few programs offered threw the drug companies like Muppet stated. Also, i would take a shot at applying for state aid if you need it, no harm right. I would also apply for SSDI if you feel you can no longer function properly. In some states, this is viewed as a disability, but determination is dependent on disease state.
You might look up Concern411 as well. She offers information on outreach programs and areas to assist those who need it.
Best of luck to you! Keep us informed and welcome again. I do hope your adjustment goes well. -hugs-
 
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