Needing Disability and Health Insurance for My Colitis

I am a 34 year old mother of two, diagnosed with Ulcerative Colitis a year ago.

At the time I was diagnosed I was told that about six inches of my colon was affected. In one year it has doubled to one foot of affected area. I have taken Asacol, Entocort, Steroids, Canasa Suppositories (gross) Hyomax, and now taking Lialda, all with NO relief. I don’t remember what normal is like. I read other stories and see that they refer to going into remission or having flare ups. I feel like the past year has been one long flare up. I can barley leave my home, for fear that I may have an accident. Mornings are the worst, I have to run to the bathroom the moment my feet hit the floor when I get out of bed, and for about 3 hours I go to the bathroom about 3 times per hour. I used to be a successful realtor, now, as if the economy wasn’t enough of a struggle to earn money, I have UC to contend with. My business has suffered and I see no way of working. I can’t show homes anymore because I’ve had embarrassing accidents. Additionally, I have endured a divorce in this past year, and to make matters worse, my ex’s employer was my insurance provider. As an independent contractor I am not eligible for insurance through an employer, and many carriers have made private insurance far out of my affordability range because of this pre-existing condition. I don’t know what to do, I can’t find another job with these symptoms, I can no longer afford my medications (which weren’t working anyway) and docs are now suggesting Remicade which I can’t afford. I feel like I’m on a sinking ship. Does anyone know of jobs that people can stay home and do?

Does anyone know if people with Ulcerative Colitis could be eligible for disability benefits or how to go about finding out?

Submitted by “Lost”

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7 thoughts on “Needing Disability and Health Insurance for My Colitis”

  1. I’m so sorry to hear that you’re not only feeling awful, but you’re dealing with so many other things too! I don’t know if you’re into writing, but I’m a freelance writer and do all my work from home because I was in the same boat as you, not wanting to leave the house but needing to work. I’m just getting started with a copywriting course and it’s apparently a very lucrative market for writers (more stable income than article writing). Anyway, you can do this kind of work from home, although I think you’d be an independent contractor (unless you were hired by a company that was looking for a copywriter and could work from home). Here’s a link to AWAI’s site if you’re interested in looking into it at all. Even if you’re not a writer, they say this is a field that involves little “creative” writing and more knowing what works and that doesn’t necessarily involve a degree in English. Good luck to you, I hope this helps and I hope you start feeling better and find a job you can do from home!

  2. The drug company that makes Remicade should be able to help you pay for Remicade. It’s a sort of financial assistance. Ask your GI doctor or go to the Remicade website for help. I hope you can try Remicade and I hope it puts you into remission. Good luck with everything.

  3. i am so sorry to here you are going through this. i would go right up to a state assistant place or call(for obviouse reasons) and see what they say. you should be able to get on something. Have you thought about having the surgery? as far as jobs at home. maybe babysitting but you still wouldnt have insurance. i think if you talk to a state assistant place it will help. will be praying for you

  4. I’m so sorry that you are going through this. My first suggestion is to call your medical clinic or local hospital and ask to speak to a medical social worker. This is part of what they do and they will be able to help you navigate the resources in your area that meet your needs.

    What state do you live in? If you are in California, Hawaii, New Jersey, New York or Rhode Island and have paid into short term disability (SDI) you will likely be able to file a claim as you are unable to work due to your flare. SDI is through the State and is for one year or less. SSDI is the Federal disability program and is available if your doctor decides that you will be disabled for one year or more-this may be hard to say with UC. It is a difficult program to access as it often takes several months to find out the outcome of a claim and most people are denied the first time they apply. So, while it makes sense to ask your doctor about this option, it is not a quick, short term solution.

    How long ago did you lose your insurance? Is COBRA an option? Have you gone to your county medical center for treatment? Counties are obligated to treat their residents and often they are the best place to get insurance help because they have a real motivation to get you insured (if you aren’t, they probably won’t get paid or paid as much). They can evaluate you for Medicaid (assets under $2000) if your disease is at the level of being a disability, or may be able to link you to Medicaid though a minor child link if your children are also uninsured (same asset requirement). Counties also have other insurance programs they can offer low-income residents or at the very least, an Ability To Pay program where you pay on a sliding scale.

    Drug companies do often have financial assistance programs and it may be possible to receive the medication at reduced costs, however you will still want to work with the county medical facility regarding the cost of the doctors visits and infusion center. Here is a link to the financial assistance page for remicaide:

    Good luck to you.

    1. Hey Emily,
      You are awesome for adding in so much awesome information here for everyone! Thanks so much, its so great to see other colitis people helping others, thx BIGTIME! and have a great weekend!!

  5. In the U.S., I believe that public hospitals are not allowed to refuse someone who needs medical treatment. Private hospitals can refuse. Additionally, public hospitals cannot do anything to your credit or seize your possessions if you are making some sort of payments. If needed you can go to the ER and get some assistance. Our large public hospital system here has patient advocates that come visit every patient. They should be able to assist you. A private hospital can seize your assets if you fail to make payments as they establish. Even though my area also has a large private hospital that is very close to me, I wouldn’t go to it for that reason. If I am recalling this incorrectly, someone please post. I remember checking on this some time ago.

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