Crohn's Disease Support Group

I have run out of my Crohn's meds - & most of the others too - since I have no insurance, no income & SSDI is making me wait until I see a judge for this level of appeal. I am dependent on my mom for support, & she makes too much money to allow me to be eligible for patient assistance programs this year.

I had always hoped that it was the meds that gave me chronic, constant, all day diarrhea for the last 16 years. I even went so far as to make a little spreadsheet listing all my meds with their most common side effects. Nearly all list diarrhea as one of the first in the packet disclaimer. Lovaza, Pravastatin, etc - even Asacol & Entocort used to TREAT Crohn's lists diarrhea, and I thought they were supposed to HELP! But every doctor that looked at my little sheet said, no it is definitely Crohn's.

Anyway, 3 months with no meds and no change in the diarrhea (I tapered off, knowing this could happen), except I no longer find the undigested Asacol in the loo. I can stand the abdominal pain, I am used to living in constant pain elsewhere in my body.

Guess I was hoping somebody was wrong. Rats. Darn. Pfui. Reality wins.

I have an appt next month to discuss less expensive meds - pray for me to find a way to survive until SSDI is approved (got to stay positive on that issue).

Cat I am truly sorry to know you are in this situation. I will say it again, no one in this Country should be refused medical care or medications due to any illness. We will all keep you in our thoughts and wish for all the best on the outcome with the Judge.

I pray that the Lord bless you and provide you with hope and strength to get through this time. I also pray that God moves on your situation with medicine and SSDI and anything else you need. Amen.

Cat, ditto to my friends, Libit and Lost.

Have you tried for Medicaid until SSDI goes through? Your doc write to the pharmaceutical company to see if they have a low cost plan for your meds. I take Humira and even though I have health insurance, the co payment is prohibitive especially with other meds I take, so the makers of Humira have a special plan where I only pay $5.00/month for Humira(the cost of the biologic is close to $2000/mo if I had to pay out of my own pocket-(OY to the infinity)

Also, a few times I spoke of a website for those with chronic illness who need consultation regarding issues such as SSDI. Maybe Jennifer Jaff, a lawyer with CD whom runs this site can give suggestions how to get the medications at low or no cost. The site is http://www.advocacyforpatients.org/

Post edited by: neshama48, at: 04/27/2012 03:44 PM

Good luck with SSDI. I know how hard it can be, we are all thinking of and praying for you on this issue.

it still amazes me that people with an illness have problems getting medicines. Only in the last 2 years has Infliximab (Remicade) been put on the Pharmacuetical Benefit Scheme. Up until then people had to pay $1500 a fortnight for treatment. I don't know if you guys know about this scheme in Australia. It it very good and the medicines listed on it cost a maximum of $36 and about $5.60 for a pensioner. But if something that you need is not on the list you can get no benefits anywhere and have to pay full price for it. Is this better than what you have over there with Private Insurance? Catfishes I will be praying for you also.

In Australia, it is still better, albeit not perfect, than here where we are dependent with private insurance. Private insurance, if you are lucky to have it, still has limitations. My hematologist had to literally fight for me to get an iron infusion that has kept me from being anemic!

I can go on, but I do not want to take away from on friend Catfish.

Cat, keep us posted!

I have repeatedly applied for Medicaid and been denied each time. I forgot to include that in my original post. I know that if I experience really severe symptoms, I can get emergency treatment at the hospital - just hoping that doesn't happen.

Although I was diagnosed with Crohn's around year 2000 & understood that having a ruptured appendix with gangrene in 1996 left me vulnerable to develop Crohn's, I was already on meds for other conditions that list diarrhea as one of the top side effects. While treating the other problems, I always wondered if it couldn't be so simple as to just be the side effects - you know, wishful thinking.

Thanks everyone for listening to my woes and for the suggestions!

WOw Cat....SO sorry you are dealing with this!Sometimes a doctor can give you samples too.I could no longer afford Asacol and they discontinued the program through Pfizer (I think that was the name of the company)...Anyways, I told my doctor and he gave me a TON of Lialda samples.I won't get into my rant on people not being able to get their meds.It might throw me into a flare..LOL!Just know that I am praying for you also

I used the web site on this forum for help with obtaining meds....have you called them?