New to forum, NOT new to crohn's :(

[tomh]

Hi from a noob-

I am 35, been suffering from this affliction since I was about 19. Went through rounds of mis-diagnosis and doctoral incompetence until about 23. I have had one resection surgery and a temporary ostomy, losing a total of about 6ft of large and small intestine after suffering from bladder fistulas for several years. The only time since all this started that any treatment really seemed to help was when I was on Remicade before and shortly after the surgery. I have been on Asacol, Sulfasalazine, Prednisone, Budesonide, pretty much everything but azathioprine which the docs said I had some sort of genetic thing that would make it kill me. So, fast forward to now. I have been having a lot of flares over the last year or so, and without insurance (I was forced to leave my job and start my own business due to my inability to work consistently). The doc just prescribes prednisone, but doesn't want me on it all the time. He just put me back on sulfa because I can't afford anything else, even tho I told him it never worked before. Every time I taper off the steroids, at about 30mg I start having stomach pain again and I also have severe pain in my lower spine and hip joint. I can barely walk for about the first 2-3 hrs of every day. I am allergic to Vicodin class drugs (severe hives after surgery), and Percocet makes me too woozy to work (I run a machine shop and like having my fingers). Now that I am on sulfa again, I can't take Ibuprofen, and massive amounts of that and Tylenol have been the only way I have been able to function for a long time. Now I lay in bed crying for the first 2 hours of every day dreading the pain that I know is coming when I try to get up. I am now severely depressed, and the thought of living like this for the next 20 years is more than I can handle. I think of ending this half of my waking hours. I found this forum last night while doing a search about Jordan Rubin's maker's diet, which sounded good until I found all the info about it online, and now I feel more hopeless than ever. I really don't see any signs that this will ever be any better than it is right now, and if this is all I have to look forward to, I really don't want to be here. I am around people all the time, but feel absolutely ALONE.

 

[Clash]

So sorry to hear of all you are going through! Is the doctor you mentioned a GI? There are programs for Remicade and Humira(the other biologic) that cover some or all of the cost of the meds. The program for Remicade is Remistart, I'm not sure of the name of the program for Humira, though I'm sure someone will be along soon who can.

I hope things soon improve for you. You can find wonderful support here and experience with the different facets of this disease, treatments(both traditional and alternative), as well as diet and supplement info.

 

[valleysangel92]

Welcome to our community, I am so, so sorry to read that you are having such a horrible time, it must be very difficult, but you aren't alone any more, we are here for you now and we will be whenever you need to, there is nothing that will make us turn our backs on you.

As clash said some medications have plans to help people with no insurance. Take a look at our uninsured group in the support forum.

I know it's not going to get rid of the pain but I use heat packs for my joints, they take the edge off enough to mean I can cope with it and get on with what I need to do for a little while. Some people are given pain patches by their doctors which have less side effects than the oral medications as they don't pass through the digestive system.. Maybe you could ask your doctor about these?

I hope that you can find some relief and that we can support you and show you that this does get better, it's not an easy road but it is possible.

 

[Jennifer]

Hi tomh and welcome to the forum!

I'm sorry to hear about everything you've been through but please don't give up hope yet. As mentioned there are ways to help pay for certain medications but there's also another way that may also help if you haven't tried it yet or if you're willing to see it through. Have you applied for SSI and/or SSDI through Social Security? http://www.ssa.gov/disability/ After reading your story I definitely think that you would qualify. Even if you are denied then you must appeal until you're approved. Once you're approved you will automatically qualify for Medicaid which is free government run health care, that will pay for all medications, tests, doctor visits, hospitals stays etc. You could also apply for Medicaid based off of low income alone. https://www.healthcare.gov/do-i-qualify-for-medicaid/#howmed Let me know if you need more information. There is help out there so don't think that you have to live this way.

If you want, feel free to check out the support group on the forum for people who are on disability or Unemployment. http://www.crohnsforum.com/showthread.php?t=51690 Many come in there asking for information so you'll find a lot of info in there.

We're all here for you anytime. :ghug:

 

[kurtflies12]

Do not give up! There is help out there we just have to figure out how to get it to you. I would dump your doctor. If all he can do is give you a drug that he knows won't work then he is worthless to you. I am on humira, and it is working for me. They do have a program that can help those that don't have the means to pay, and i think you can find information on this web site. I know lots of doctors that are wonderful people and are willing to help those in need. Not all of them but more than you might think. Look around this site and see what you can fine. The admin folks seem to be on the ball and know what you are going thru. If you can't find a solution PM after a few days, PM me and I will help you. You are not alone.
No joke

 

[tomh]

Here's the thing- I have 5 kids, and my wife is blind. So she can't help support them. She has never worked, so she can't get disability because she has no SSI credits. If I bring home 60,000 a year, we are just scraping by. 7 people in a 950 sq ft 3 bedroom house. BUT- we are halfway through the mortgage. If my income drops enough to get assistance with the meds, we can't feed our kids. (I know, that's the state I was in when I had the surgery.) So, I either need to make like 150k a year so I can buy good insurance (yeah right) or like 25k so I can get help. My doc doesn't think I am sick enough to get disability because I have worked through all of this. He doesn't know that it has been through pure stubborn determination and lack of options. After my surgery, I was back working 8-10 hours a day IN 15 DAYS. With an ileostomy. I take my responsibility to provide for my family seriously, and it is KILLING me that the only way I can get treatment is to make them live in poverty.

 

[Jennifer]

She can get SSI. SSDI requires you to have worked but SSI does not. The link I gave talks about each and how to apply.

Having another doctor to back up your disability claim would be best rather than trying to change your current one's mind. You worked because you had to. I have no doubt that you would work yourself into the ground for your family but that doesn't mean that you don't need assistance. Whenever possible, try going to your local Social Security and Social Services offices to see what sort of programs they have available to either you, your wife and for your children. They can help you understand what you would qualify for if you or your wife or both received SSI (things will be different since you have 5 children and a house).

I understand your concerns about forcing your family to live in poverty so you can have proper treatment. I grew up in poverty myself because I was the sick one. My medical bills drained my families funds and made my parents get behind on payments causing my dad's wages to be garnished multiple times until I finally qualified/was approved for SSI in 1996 when I was 14 years old. My parents had 4 children and couldn't afford to feed us but the state and county do provide free food to needy families by having multiple food lines at different locations once a week so you at least have food to feed your family with. Since then I've learned that our health is far more important than anything else. Then again we never lived in a house that my parents owned. We only rented and for now I'm still renting. The cost for staying healthy is extremely high in the United States but it wont take your life and doesn't have to be forever. Being on disability can be temporary, meaning living in poverty can be temporary as well and while most people don't want to live that way sometimes we have to in order to survive and provide a better life in the future where not only are you not in poverty but you're healthy as well. I guess I only have my own perspective from growing up and then growing into an adult while still in poverty to go off of though. I hope you're able and willing to find a solution even if its temporary. :hug:

 

[tomh]

We already tried applying for SSI for my wife, and if you have more than 10,000 in TOTAL assets you do not qualify. Our Excursion by itself puts us over the edge. Try running 5 kids to soccer, football, volleyball and everything else in a Dodge Neon. I did not feel at all like the people at our local Social security office tried to help us. As far as being poor now so I can be healthy later, the pattern of my disease has been that as soon as I stop the expensive treatments I get sick again. So I could liquidate our assets, spend it all on treatments, get better, go back to work, lose health care, get sick again, etc,etc. End result is staying poor forever. My family will be in better shape if I just work as hard as I can and save up as much as possible while living on the false high of steroids, die, and leave them with my survivor benefits and a fat insurance check. I am always so depressed and moody from the constant pain they probably won't even miss me very much.

 

[Clash]

Have you checked into the Healthcare exchanges that are now set up? There should be a website in your state. I know the insurance won't come in effect until the first of next year but it might help to check it out and be prepared.

The Health Insurance Exchange implements State specific marketplaces for health insurance. Americans making under 400% of the Federal poverty level can use their State's marketplace to buy Federally regulated, subsidized private health insurance from competing providers.

It might be something to look into, I know it can't help you now but understanding it and being prepared for it may help you out when it is up and running.

Good luck, hope you find some answers and receive some relief soon.

 

[tomh]

Our state is having problems with their website, it won't allow access to the federal subsidy programs. Gonna have to wait and see. So far all the subsidized plans I have seen have horrible out-of-pocket and deductibles. I would need to allocate 30-35,000 a year just for premiums, deductibles and copays. That is over half my income. Hoping the insurance situation gets better, but I am not seeing anything about the new healthcare system so far that makes it any better for my situation.

 

[Clash]

Here is a calculated results for a family of 7(2 adults, 5 children), non smokers, residents of Oregon, with an income of 65000.00 a year for healthcare exchanges silver plan:

Results



The information below is about subsidized exchange coverage. Note that subsidies are only available for people purchasing coverage on their own in the exchange (not through an employer). Depending on your state's eligibility criteria, you or some members of your family may qualify for Medicaid.
Household income in 2014:183% of poverty level
Unsubsidized annual health insurance premium in 2014:$11,571
Maximum % of income you have to pay for the non-tobacco premium, if eligible for a subsidy:5.5%
Amount you pay for the premium:$3,573 per year
(which equals 5.5% of your household income and covers 31% of the overall premium) You could receive a government tax credit subsidy of up to:$7,998 (which covers 69% of the overall premium) .

The premium and subsidy amounts above are based on a Silver plan. You have the option to apply the subsidy toward the purchase of other levels of coverage, such as a Gold plan (which would be more comprehensive) or a Bronze plan (which would be less comprehensive).

For example, you could enroll in a Bronze plan for about $1,592 per year (which is 2.45% of your household income, after taking into account $7,998 in subsidies). For most people, the Bronze plan represents the minimum level of coverage required under health reform. Although you would pay less in premiums by enrolling in a Bronze plan, you will face higher out-of-pocket costs than if you enrolled in a Silver plan.

Out of Pocket Costs

Your out-of-pocket maximum for a Silver plan (not including the premium) can be no more than $4,500. Whether you reach this maximum level will depend on the amount of health care services you use. Currently, about one in four people use no health care services in any given year.

You are guaranteed access to a Silver plan with an actuarial value of 87%. This means that for all enrollees in a typical population, the plan will pay for 87% of expenses in total for covered benefits, with enrollees responsible for the rest. If you choose to enroll in a Bronze plan, the actuarial value will be 60%, meaning your out-of-pocket costs when you use services will likely be higher. Regardless of which level of coverage you choose, deductibles and copayments will vary from plan to plan, and out-of-pocket costs will depend on your health care expenses. Preventive services will be covered with no cost sharing required.

Other Coverage Options

Children and young adults under age 30 are eligible to purchase catastrophic coverage. With a catastrophic plan, you would pay out-of-pocket for most health services until you reach the annual limit on cost sharing ($12,700 in 2014). However, preventive services are covered with no cost sharing required.

Children under the age of 19 may also be eligible for coverage under Medicaid or the Children's Health Insurance Program (CHIP), depending on your state's eligibility requirements.

Here is the link that I used to obtain these calculated results:
Subsidy Calculator

Also, since your wife and you both have health issues I wouldn't access the website to sign up but would instead get in touch with one of the "Obamacare counselors". The info I have read though is that there are a lot of glitches with the website and not enough of the counselors to effectively cover each state.

I have issues with Obamacare(ACA) as well so I can understand your frustration with it and to add on everything else you are having to struggle with I can imagine your stress levels are high.

 

[tomh]

Thank you. That is more help than I have gotten from all government employees combined in the last year! I will dig a little deeper. The 4500 out of pocket seems way lower than what I have found so far. Is that possibly a per-person number?

 

[Honey]

Hi there,
The nature of the illness is that you are on an emotional rollercoaster as you cope with pain , and all the changes. I too, shed a lot of tears behind the scenes as just when I thought I was getting better, I either reacted badly to the meds, or they did not reduce the inflammation. You also have the additional worry of funding treatment. I hope you get some help there.
I was on Budesonide for a long time, until I agreed to Remicade infusions, every 8 weeks. This treatment is only used when all else fails.
Use this forum to vent your feelings as sharing with other sufferers helps to get rid of the ' feeling alone.' Remember though, we are all individuals in our response to meds. Let me know how you are. I hope you feel a lot better soon. I will keep you in my prayers, that helps too.
:sun::hang::sun:

 

[CaseyC]

Humira' s program is Humira patient's assistance program. They accept uninsured. Take a look and have your doctor help you as well. Sorry to hear about all your problems, but you're not alone here.

 

[tomh]

After a painful weekend, I tried getting hold of my doc today to find out if I could at least go back on the steroids until the sulfa will supposedly kick in 3 months from now. Since he told me no advil or aleve because of the sulfa, all I have been able to take is Tylenol, which doesn't even begin to touch the joint pain. It took me almost 3 hours to get up and get to work today, and I hobbled around the entire day. As it turns out both my doctor AND his nurse took today off. I left a detailed message for the triage nurse and never got a call back. So now I am dreading the end of the day, as the pain usually gets much worse in the evening, but it never got better during the day this time. I can't bear the thought of another night of basically no sleep as I try to lay perfectly still so my hip and back don't explode with pain. I really just don't want to do this any more. Please tell me that if I just keep going like this I will die soon and it will finally be over. I am just at the absolute end of my ability to grit my teeth and keep holding out against hope that some miracle will fix me. I already lost my ability to have faith in God a long time ago over this evil disease.

Tom

 

[Jennifer]

Did your doctor tell you something specific about combining Ibuprofen and the Sulfa? After looking it up, Ibuprofen and acetaminophen have the same general warning of possible increased risk of kidney problems when used in combination with Sulfasalazine.

NSAIDs in general are not recommended for people with IBD because of the increased risk of ulcers and bleeding yet sometimes we have to weigh which is worse depending on the situation. I've been forced to take Ibuprofen many times because of severe joint pain and I know that Afidz has to use it as well but deals with more extreme pain.

Hopefully you can get a hold of your doctor soon. You shouldn't be left in so much pain.

 

[afidz]

Hello. I'm on my phone so there will probably be typos. I apologize in advance.
Not sure if you said this or not, but have you hired a lawyer to fight for ssi? They don't get paid unless you win and they just take their payment or of the back pay. And then if your wife does get it, each of your kids will receive it as well along with insurance. (They don't get the check you do, it is for benefit of) I highly recommend hiring a lawyer to fight for your wife. And, it doesn't matter if your doctor does or doesn't think you are eligible for it. The only thing they do is send in your medrecords. Social Security have their own doctors. And again, hire a lawyer for this too.
add far as taking an NSAID, for the time being I don't have a choice. I have very severe back hip and knee pain that are intolerable. I just came off of an opiate addiction and I don't want to go back. I make sure to take it on a full stomach with plenty of water and I am careful to watch for signs of bleeding. No, it's not the best solution, but living with pain isn't either. Another option is to get a NSAID patch. I b put it on my back before I go to bed to reduce the inflammation that occurs when I sleep and in general it is a lot easier to get out of bed in the morning.
Another thing you might want to consider is seeing a rheumatologist. To me it sounds like there is a possibility of arthritis in your spine or hips, arthritis is very common with Crohn's.
I hope all this helps, feel better