Crohn's Disease Support Group

Hello, I'm new here and would like to share my story.

1992: After a lenghtly stay in hospital was diagonised with crohn's in my esophagus and duodenum at age 16, dropped from 140 to 98 pounds put on IV steroid during my stay and got better quickly. Upon release was put on Prendisone and Imuran. The prendisone jacked up by blood sugar and was declaired Type 1 diabetic. Insulin shots and everything. When went of steriod, diabetes cleared up and lived normally till 1999....

Severe attack in large intestine, put on Prendisone and Pentasa and it cleared up with in weeks; no adverse effects on blood sugar this time and went med free till late in 2009....

Currently flaring up again and this time its MUCH different; no diarehha but constipation, dark and bloody stool but mostly solid...persistant fever and a profound fatuige. This time I asked for an alternative to prendisone and am on Hydrocortisone and Pentasa.....and again type 1 diabetic. but the crohns is hanging on this time...they wanna start Remicade.

As of today I'm off the steriod and hopefully my blood sugar will return to normal soon, its only been 3 days since stopping hydrocortisone.

Two weeks ago i was fired by my employer for taking a week off work on orders from my doctor. There goes my insurance as well. Havent figured out what I'm going to do now about treatment. i cant afford the $1600 per session for Remicade and the Pentasa is almost $700 per refill, my savings is nearly depleted from this and im falling into a state of depression...any advice as to what to do when the money runs out? im thinking of cutting my Pentasa dose in half to make it last longer.

That is pretty heartless to fire you for being sick. Is that even legal? Can you get unemployment or SSI? Do you have any type of low income place there that helps with meds? You really need to try to find a way to get them. I wish I knew a way to help.

Can you go to the HR dept of of place of business or union rep to appeal? CD is covered under Americans with disability Act and what your employer did is discrimination and you can sue. You would have to get a good ADA attorney.

On getting Pentasa, calling the manufacturer and see if they have a patient assistance program to help you out with providing you with Pentasa at a much lower cost.

Dbreeze,

I am so sorry to hear what you went through with all this. Crohn's unfortunately can be very cruel. I don't know too much because i recently was diagnosed and still am learning.

But i do suggest a few things? What Neshama48 said about suing your place of employment is a total possibility. Hello? they can't fire you because you were out on leave, and with a medical approval from a doctor at that. How long were you working for the company?

Did they straight out fire you or lay you off? Could you look into unemployment?

Also, usually after you leave a company, you are eligible for a type of insurance still through your work, like Cobra has for many employers. Depending on how long you worked, you can still continue your insurance after some time. Look into that.

Pentasa..yes, contact the manufacturer and see what their patient assistant program is. They actually do have that program, i am 100% certain that they do. I don't know what they require in terms of approvement, but don't think it's so hard to do it.

REmicade... this for a fact, i know the manufacturer offers patient assistance program and this is super easy. Contact them, tell them you are no longer employed, you need Remicade, etc. they will send you forms to complete and also to have your GI complete confirming that you do need the REmicade. He will fill out how many you need in a year's time, approx and the dosage. Once your form and the doctor form is completed and they receive it, a few days after that, you will get a notice approving you for like totally FREE remicade.

They just then coordinate with the doctor as to where he wants it shipped to, etc.

Also for Pentasa, what about the closest thing to it as a generic: Colazal. that's just as good and way cheaper.

Hope this helps. But please look into your rights about your work firing you. Go to HR about it and complain, show them the DR. not. Do not walk away from this quietly. This is your time to fight!!!

Let us know!!! Best wishes and if you need anything, I am here

DBreeze you need to contact the ADA and speak with them over this matter. Your employer should never have fired you under these circumstances. I'd get a lawyer that knows the laws and fight it all the way. No one should have a disease like crohns and be treated the way you have. Please let us know what you are going to do. Best wishes to you.

well, im not exactly afflunent enough to get a lawyer involved and have applied for umemployment. The little guy always gets screwed but im not bitter; being off will probably help me get well as it was a very phsycial job. When I was let go the manager told me that corporate is probably gonna let me get unemployment and thinking of applying for SSDI.

Thanks for the advice about getting the drugs as low cost, my GI also said about this for Pentasa and they are looking into it.

Another question: Docs are saying I'm gonna be on insulin for life but I think it's steriod induced; they dont seem to understand this. Anyone here been thru this or even heard of it?

i got so many questions for you guys here; gonna have to open more threads soon, my GI has been kinda vague about some things and maybe I can get some answers here....

Danny which ever way you choose to go just know that what they have done is illegal. Crohns is a disease that is recognized by the ADA. You do not have to be super intelligent if you want to follow thru on that end of it, the lawyers will do the work for you. Anyway just see what your GI can help you with in applying for disability. Honestly you've been shafted on the whole deal. You'll learn more here from the members then your Doctors. So if you have any questions please ask. Everyone is sincere in helping you. Glad you found us and I look forward to getting to know you!! Best wishes for you.

A couple years ago, I had no health insurance and also was taking Pentasa. I couldn't afford to get it either. I started getting it from Canada instead and a much cheaper rate. It was only $100 something for a refill, which is a lot better than $700 something. God Bless those Canadians!

I didn't think it was legal. I would sue too.