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Ulcerative Colitis
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Posted 5/14/2010 9:11 PM (GMT 0)
I am new to the forum today, and am very thankful to have found this.  I will give my story, as abbreviated as possible.

I am a 36 year old male.  I have had UC for eight years.  I have been on every drug, including trial drugs, that are prescribable for UC.  I am currently on Asacol, 20mgs of Prednizone, 3 Immodium, and Remicade.  Even on these drugs I am having 8-12 bowel movements a day on my best days, and upwards of 30-40 on my worst.  All of my bowel movements are diarrhea and contain moderate blood loss.  They are also uncontrollable.  I feel that I have never truly been in remission in the past eight years, but within the past three years it has gotten to the point where I am unable to leave my house unless I don't eat for a couple days, and even then I still run the risk of having an "accident".

I cannot work.  Disability has been a nightmare trying to get (still in the process....may have to go before a judge).  I cannot afford insurance.  I have liquidated all of my savings and investments and am now facing losing my home.

I have read a couple posts about surgery, and am going to dictate to my doctor on Tuesday that we pursue that.  I have no idea how I can afford it, or if there are any options for me.  Does anyone have any advice on surgical options or disability or any other road that I might travel down?

I feel that my life is really pointless right now unless I can figure something out soon.  I am not giving up, but I feel hopeless more often than not.  Sorry to poor mouth.  I just don't know where or who to turn to for help or advice.  Thanks.

Posted 5/14/2010 9:17 PM (GMT 0)
i am so sorry! it sounds terrible. i don't know about insurance and disability, unfortunately. if i wasn't on my husband's group insurance plan, i would be screwed! i called blue cross today to see about individual plans and they wouldn't insure me no matter how much i was willing to pay!

i was just curious, what alternative treatments or therapy you have tried?

also, at times my flare-ups have been so bad that i have taken up to 80mg of prednisone a day. have you asked your doctor about increasing the prednisone? also, what about imuran? at one time that drug helped me to go into remission and stay in remission for years. hang in there!
Posted 5/14/2010 9:18 PM (GMT 0)
I know it is difficult but things will get better. Surgery is an option but it is a long recovery and I am sure it is expensive. Do you have good insurance? Have you looked into any new clinical trials in your area? It sounds like you've done all the right things and still haven't had luck getting this under control. Surgery is probably going to make you the happiest in the long run. Have you discussed surgery with your GI?
Posted 5/14/2010 9:25 PM (GMT 0)

As for insurance, I had a lapse back in the day and it is now considered pre-existing.  In addition, I can no longer afford it.  As for talking to my doctor about surgery, he has been very hesitant to really entertain the idea.  I sometimes get the feeling that he thinks that he can figure out some combination or another of drugs that will work.  Nothing has worked thusfar, and I have already been on four different trial drugs (all of them are in the same class as Remicade), and they have not worked either.

I guess I am just trying to figure out a way that I can get surgery and find a way to help pay for it through some orginazation or some trial surgery or something...

I was also wondering if anyone out there had any luck with disability as I would then qualify for Medicare, thus having some sort of medical coverage at that point.  My goal ultimately is to get fixed and become a useful part of society again.  I would give anything to be able to go to work and leave my home, but at this point I can't leave my house.

Posted 5/14/2010 9:28 PM (GMT 0)
I would see if your GI has suggestions. It would be great to find a compassionate surgeon who would do it pro bono (like lawyers do). Another off the wall suggestion is to start a web page where you solicit donations for your surgery, include photos and a biography/description of your journey/experiences and why you desperately need the surgery. I know it sounds crazy but people do these things and have success. I have student loans well over 100,000 and have contemplated it myself to pay them off. I am not very computer savy though. It seems like even if you don't know how to go about it you could find someone who could help set it up. It is worth a try and it does not sound like you have that many options. This would also be an excellent way to educate people. Maybe the CCFA could offer some help/advise also about finding a compassionate surgeon: ccfa.org
Posted 5/14/2010 9:32 PM (GMT 0)
I think you should be able to get disability. You may be able to get a lawyer through legal aid (free) to help you through the process so you can then get medicaid. You may also want to get your GI to refer you to a surgeon so you can a least discuss your options. If I was in your situation I would want the surgery. It sounds like your quality of life is very low. I feel for you and am saddened to hear that you feel you have so few options available.
Posted 5/14/2010 9:33 PM (GMT 0)
And people wonder why I support national healthcare.

If I were in your shoes, I would move to surgery without question. UC is having a severe effect on your life and obviously medicine is not helping.

With regards to the financial situation, how are you paying for your meds? If you don't have insurance, those meds can be extremely expensive.

I would contact CCFA and see if they can help you. They will know of all the possible financial assistance for UC sufferers.

Sorry to hear you're in this situation. I hope that you find the answers you're looking for.
Posted 5/14/2010 9:42 PM (GMT 0)
Also, read one of the topics further down created by "Chef Patrick". He had a similar question and Peety had a excellent response which I believe applies directly to you.

Here, I went ahead and pasted in Peety's response to Chef Patrick.

"Every hospital has a charity care and financial assistance policy, but sometimes you have to ask about it, they won't tell you. Ask.

Also, be sure to ask for the rate that insurance companies pay, it's less than the "charge." Ask! They would rather work with you on that than have you go to the legislature and complain that they made you pay more because you don't have insurance.

Everything is negotiable. Just don't ignore bills, that's what gets people into trouble. Keep communicating with them, even if you can't make a payment."
Posted 5/14/2010 9:54 PM (GMT 0)
Thanks to all of the helpful posts! I will be having a discussion with my doctor on Tuesday about surgical options. And I'll look into all of the suggestions that you have mentioned. I pay for most of my meds through the generosity of the pharm companies believe it or not. They offer free medication (Remicade and Asacol) for people that have no income. You just have to fill out the forms and submit your W2's and financials to them.

These forums are truly a blessing as I feel like UC is not that well known in the mainstream, and flies way below the radar. Thank you again for the replies, advice, and good wishes.
Posted 5/14/2010 9:59 PM (GMT 0)
Rich, hi and welcome!  I am so sorry to hear all of the struggles you have had.

Please check this website,
http://www.needymeds.org/copay_diseases.taf?_function=detail&program_id=57

It links to another page, but this first link explains the page it links to quite well.  I hope it might help you to some degree.

FWIW, I'd for sure be booking surgery if I were you.  Try to research colorectal surgeons in your area...it might just be that they'll donate their services after hearing your story, or know of other ways to help you. 

Posted 5/14/2010 11:18 PM (GMT 0)
I know a couple people that went through a similar situation with other illinesses.

1)If you have assets(above water on the house etc), you absolutely have to aggressively get yourself social security disabled. There is a waiting time to get on medicare once you do that. If you have few assets and no income, you might be able to get on medicaid at that point. This depends on the state. The CCFA website does have information on UC and getting disabled. Call CCFA right away. Make sure your doctor can construct a convincing history and find out how those that have gotten disabled with UC did it. I believe you almost always need to go before a SS judge but that is normal unless you have one of the short listed conditions.

2) If you really have few or no assets, call your states medicaid/welfare office. Explain to them you are broke and need surgery to be able to work. They may be able to refer you to a social(case) worker.

3) Talk to your doctor about which hospital might be the best to approach about charity or paying off the surgery. I believe that Mayo has a program for the uninsured and so do other large hospitals. Having a doctor that does a convincing referral is very important. Be warned that many hospitals will want to make a up front reduced cost deal for services. You will have to raise the money before hand.They do this because people go bankrupt and leave them with the bill. There are organizations that can help with this just ask the social worker. Some have a lot of success raising funds on the web.

You are going to need to be persistent. If you can't handle it, find a relative or friend that will call around and bug people. Do not give up.
Posted 5/15/2010 6:57 AM (GMT 0)
Again, I want to thank you all for your responses. You have given me a lot to do and think about. I am so thankful that I found this site and forum. I feel like I've learned more in the past several hours reading these posts than I have in the eight years that I've had my disease and the countless visits to the doctors.

I look forward to being a new member of this community. Again, my most heartfelt and sincere thanks.
Posted 5/15/2010 12:01 PM (GMT 0)
I know my hospital does have a charity/financial aid program for uninsured. My doctor also told me that he would do my second surgery without charging if I had lost my insurance between surgeries. So there are doctors out there who will work with you!
Posted 5/15/2010 1:43 PM (GMT 0)
Have you looked into state insurance?  Like here in WI we have title 19. Also, yes the hospitals will pay up to a 100% of your bills if your low income(which you are).  You do have to ask they will not tell you about it.  You just send in your taxes from last year and fill out some paper work.  Then you get a letter saying they will pay 100% or 50% of your bills.  We don't have insurance because my husband lost his job and no one will cover me.  I'm on title 19 I get my remicade and all my meds paid for.  What are you to do.  I can't be without insurance I could never pay my medicine or the dr appointments.  The way the health insurance is sucks.  I will always run into pre existing because no one will cover me.  It sucks.  I'm sorry maybe look into that.  UC sucks I'm to at the end of the road.  Remicade is stopping how often I go to the bathroom but not healing my colon which is still severe through out.  They do have a trial going on for a biologic it is in a different class and they want me to try that.  I don't have any more infor when I get it I will post about what it is and everything.  My doc said for the remi don't work(as long as your not forming antibodies)then humira and the others in that class will mostlikely not work.  I want to try humira and the remi isn't working on me not because I formed antibodies just because and she said that happens in 20-25% of people.  I feel for you.  I tried to get disability and they denied it right away.  You will have to get a lawyer and do all that.  I'm not bad enough right now so I won't even try.  I think you are though.  I think the lawyer is free you have to pay him if you win.  Worth a shot.  My husband works and thank God for that.  Good luck.
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