ostomies and insurance

Hello all

Everyone has been so helpful on various issues so I thought just mayb some1 out there might b able to provide some info for me.

As u may or may not know I'm do to have my temp ileostomy next month (very afraid of what to expect,but I guess its for the best) due to chronic abcesses and rv fistula.

Due to constant hospitalizations I have missed a lot of time at work, and I have just used up the last of my Fmla time (family medical leave which provides job protection). I am now fearing termination as I haven't been cleared to go to work.

The supplies and care for this thing looks expensive. If I lose my insurance am I just plum out of luck?! Will I lose my quality of care? Iv heard horror stories of people who were stuck w/their ostomies b.c they wouldn't take them off w/out payment.

I'm worried that now that I have come to the realization that I have to go ahead and get it, I won't b able to afford the necessities. Has anyone out there dealt with this issue?

Fyi- I go for my first dose of humira 2day, we were supposed to see if it would close the fistulas, but now that its too late I'm wondering if there's even any point.

Hi Praying4Healing:

I'm glad you brought this subject up. I think it is an area we should discuss at greater length in this forum. Before I got sick, I was a partner in a CPA firm. I made a good living and had the bills to go with it (i.e. mortgage, real estate taxes, etc.).  Fortunately for me, I had some good private disability insurance and I am covered under my wife's health insurance. Financially, I was about as prepared for my medical odyssey as one could be, yet, I still have a hard time managing. Edgepark is my supplier, like Amey's, and I too find them to be expensive.

But, this is not an insurmountable problem. As usual, Amey has offered some excellent suggestions. Also, it seems like you would be entitled to COBRA benefits. Even though terminated you are entitled to extend your benefits. Unfortunately, you would have to pick up the premiums but, facing surgery and recovery, I'm sure this would be less expensive than going without insurance. I googled COBRA benefits and found that WEB-MD had an excellent FAQ site concerning these issues. I might also add that the social worker at the hospital was remarkably well-informed regarding these matters. Maybe you can speak to one at the hospital where you are planning your surgery?

I don't want to pry into your financial situation but if you have further questions I would be happy to see if we could find some answers. 

Richard

Thank you both so much for your responses! I thought I would never get a response b/c this was somewhat of a "dry topic" if u know what I mean.

Amey, I'm glad you replied b/c I wanted to thank you. When I was searching for info on ileostomies I ran across your photo 3 weeks post surgery post and u seemed so happy after your surgery you convinced me to face it(especially after seeing the pics of u in ur workout clothes) and also to join this site so that I could discuss my fears and concerns. Thank you so very much! One question tho...do u regret getting it now that its been a few months? Are u still happier?

Richard, thanks for your input, I will look into cobra, I have some money I was saving to put down on a new car but if I have 2 use it to pay a premiim I guess that's what I have 2 do :o(

As far as my financial situation goes, I'm not a popper or n e thing (at least not yet lol) but I just finished college last year (after 6 years thanks to my great pal crohns) and this was my first real salary based position, I was just starting to get my footing as a responsible young woman and this becomes my life. Lucky me!

Praying,

I work as a small-business manager. I've been out of the office for months, but I work from home as much as possible and I still have a job and health benefits. I think it's important to talk to the hospital social worker and your surgeon about the insurance concerns. There are a LOT of loopholes in insurance (I'm a manager of a surgeon's office) and you will come out of pocket for deductibles, but your surgeon can "time" your surgery so that you get the majority of your healing etc. done before you could lose your benefits due to termination.

I don't know what your relationship with your employer is, but one thing I have found helpful from both sides of the fence is if an employee is willing to talk. You are not obligated to tell your employer anything other than you are having surgery, but you may find they are willing to "hold" your job or extend your benefits even if your employement status changes out of sheer humanity. You can educate them about your ability to work without interruption or any future sick days once you have an ostomy beyond the necessary recovery time. You can communicate and you *may* find they will aid you in ways you can't imagine. My first surgery was in2003 and it was an emergency procedure. I was 23 and didn't know to tell my manager anything other than I needed emergency surgery for a reproductive issue. He had no idea that I'd been as sick as I was because as chronically ill person I had "hiding' my problems down to a science and a schedule. I lost my job after FMLA ran out and I was still facing more surgeries and hospitalizations.

I wrote a letter to corporate Human Resources, I was a journalist, and for the first time I was honest about what I had been going through. I wrote the letter because I received a poor final evaluation and there I was, in bed, scared half out of my mind and knowing I had worked 10 times as hard as anyone else but faced health challenges that made me appear inconsistent. Although I was terminated I received flowers and cards from my former coworkers and someone from corporate HR continued to stay in contact with me for the next 6 years. I was in no shape to return to journalism, but that letter saved a professional relationship that would have been ruined because I didn know to communicate with my employer. They advised me on Cobra and rescinded the poor final evaluation because it was "ill-informed." They helped me navigate receiving unemployment benefits and just HELPED me with all the things I never could have known how to do on my own because it was my first job.

As an employer I have had employees go out for emergency surgery and I have established a policy that "we can talk." While I did not disclose my health issues until I started having surgery again in 2007 (worked as a manager for 4 years and didn't say a work, again chronic illness coping skills) but I held jobs for employees, helped them navigate insurance rules and dedutibles - the same as I do for patients who come to my practice for treatment.

all that to say, Prepare a statement and see what your company can do for you. don't downplay your illness or your age or your ignorance in these matters. People often want to help but can't when they don't know *why* someone else seems erratic. Feel free to contact me, I'll assist as much as possible with the insurance angle and getting the most bang for your buck.

Thanks for the question, it's a great one. Money is such an important part of recovery - but one we seldom talk about.

Hey stomagrl,

Ur so right, that is a major issue of mine. The only people that ever really knew my condition was my roomate from college, and my best friend ( who are both the mothers of my god children). I never actually told anyone else, guys i dated, friends i've had just knew i had "stomach problems" since i was only hospitalized about once a year * and once i went two years!*, i didnt have to address it much.

Being in a working environment like this for the first time ( u know no longer working at the loft or target part time during college). I havent told anyone, I havent actually told my manager or anyone else because i feared that they wouldnt trust me to do my job, I expected FMLA to keep me covered, but like i said, this has been my worst year ever ( about 4 hospitalizations and more trips to the er), and its all due to the fistulas, and abcesses.

The only reason I elected to have the surgery is b/c of the rv fistula becoming less predictable and controllable, I did not go into the hospital last month with this issue, but when i came out I had it, and now i'm 25 and wearing depends "just in case" and i figure this is way more embarassing or just as unnatural as a bag would be.My doc says I'm stoic and I must be a soilder because with all I have going on back there I shouldnt even be walking. And honestly, I had been willing to deal with the pain I did experience, just to avoid going the surgical route.

Now, i am kicking myself b/c I've waited so long to finally say yes, and now my insurance is the issue. I just dont want to do this and be left out in the cold and become a horror story. not to mention that when ur actually in the hospital going thru all of this pain, finances, work and insurance are the last things you think about. I couldnt wrap my head around dealing with these real life issues. My grandad preaches this sermon sometimes entitled "If it ain't one thing, Lord knows it's another" and going through this, that touches soooo much closer to home. I dont know what I will do, but Stomagrl did give a good suggestion and I guess anything is worth a shot.

Please do not hesitate to give me any more info you guys! I write all of this down, so that I dont forget to look into it all. This place is so helpful. I go to the doctor thursday to inform them that I've elected to have the surgery. I will see what happens next. You guys are soo great I can't say it enough. I didnt mean to write a book :o/ sorry

Peggy,

I am in jersey and I'm not quite sure if its the same everywhere, but here FMLA is given to you through your job. It provides job protection so that you can't get fired due to absences because of your medical condition. Not only could your husband have it through his job, but if you had to take care of him, you could use yours as well. Thats what my mom did for me, because you can get it so that you can take care of someone in your family with an illness.

You asked when it takes effect, through my company it takes effect as soon as you finish probation and are a permanent employee. HOwever, you only get 12 weeks a year, which sucks for me. I assumed that when the new year came I would be able to start over againwith my FMLA, but I just found out that its a year after you first started using it (which in my case was May, so I have used all of my FMLA and wouldnt be eligible for anymore time until May of 08) I hope that makes sense.

I too was turned down for SSI,and it has been suggested by friends of mine that I re apply. did u know if u keep applying and make it through that they have to pay you retroactively from the very first time you applied?! so i figured it can't hurt. Its just that the process is so time consuming, i think thats to discourage people from getting help, the same way as public assistance, which i was on at one point during college, but didnt get much medical help b/c my illness was not "on the approved list of illnesses". That was years ago, so i dont know what the policy is now.

Also, in my company, you only have to use a certain number of your sick/vacation days before you can receive short term disability. This way you still keep your sick/vacation time when you return to work. Only sometimes in your company is FMLA without pay, this is after all of your sick time is used.
For example, being a new employee at my job i was only given like 120 hours of sick time. which meant that if i was out with my illness, i could still get paid for 120 hours, but once that ran out. I still had a job because i was protected under FMLAbut could not get paid.

I think all of that depends on your company. I hope this information was helpful w/out being entirely too long. And I will be praying for you and your family as well.

Hi Praying, Peggy113 & All:

My insurance guy told me that you cannot be denied insurance coverage for existing condition, EXCEPT, if you let coverage lapse for 63 days, then they can deny coverage for a preexisting condition (occurring during the preceeding 12 months) for the first 12 months of your new coverage. It seems the idea is not to let the coverage lapse. COBRA can extend the coverage for 18 months after job termination. But you have to pay the premiums yourself.

I tried looking up information on the Family Medical Leave Act.  The Dept. of Labor has a site at www.dol.gov/esa/whd/fmla/ that has a good FAQ section that could answer a lot of questions. This is a Federal law so I think it would apply throughout the USA.

There are many sites regarding Soc. Sec. Disability. I think it is very tough to succeed on an initial claim but many people are successful on refiling.

Dancerpeg's situation illustrates one of the many things wrong with the healthcare system in our country! I really hope things work out for you.

Richard

Richard ,
I too want to say thanks for the info. Especially the info about the lapse time, b/c I definitely didn't know that and that information would seem vital to a person n my condition. I'm thinking after my surgery this month I may re apply for ssi.

I called my job about cobra and theyr supposed to be sending me some info.
The health system is very confusing and discouraging in this country.

Peggy, my prayers are with you and ur family. U mentioned that ud be applying for long term disability. I just applied for short term disability, is this different? Would I have to reapply for long term? Do u know the qualification requirements?

Hi guys,

this is off-topic of money(prayer i just saw your response, been sleeping a few days as i recover and wasn't cruising the chats like usual) but I created an Ostomy or - " A little of my Ostomate Journey" photo album on Myspace. that's right kids, Myspace.

Prayer4Healing I did this primarily for you to see that the ileostomy is virtually undetectable, but also for the nameless faceless others out there who cruise the internet looking for some REAL example of what they are facing. The pics are all of me in some state of ostomatosis (did i just make up a word?). There is me with ileostomy, me without (after reversal), me traveling with ostomy, and recent pics of me looking entirely too happy post colostomy surgery. I have more pics of me eating and traveling with my ileostomy (my two loves - food and travel) and I hope in the weird scary moments they give you some help. My blog is also pretty entertaining, I'm told and I talk about being an ostomate on and off.

My myspace page:

www.myspace.com/chcknhed

a "direct" link (quotatin marks are cause i think you have to have a myspace membership (free and quick) in order to see:
http://viewmorepics.myspace.com/index.cfm?fuseaction=user.viewAlbums2&friendid=45696414&view=true

i hope this helps and doesn't violate any rules.

yea ash

i think u do have to get cobra thru ur previous employer but i think you have like 90 days. when was ur last job? has it been more than 90 days? Other than that, I'm pretty much soon to be in the same boat as you are except I dont have any children, and am no where near marrying n e one so I can't even get medicaid that I know of.  Have you tried public assistance? It's a hard place to be in, everything is so hard to get. You have to put yourself in a worse position then ur already in just to get help. Let me know if you find out n e thing else, as you can see, i'm lookin for help on the same subject

Praying4healing,
How are you doing? Dave went to the doctor yesterday and we are waiting for them to consult with the GI doctor before doing anything like TPN line and maybe another surgery. Well I know that Dave will be covered until March with the help of shared hours for Feb. But really don't know what we will do after that month if it goes that long. I asked if he going to lose his job and they told me no. Which is a blessing to us. I am going to do is long term disability that something that goes into effect after 90days we did not set up short term disability. Well I hope thing go well with your surgery when it happens keep me in touch and I can pray daily for you while you are healing from the surgery.
Dancerpeg

I agree with StomaGrrl. My personal policy was highly regulated and they nit-picked over every little thing I did. However, the insurance agent who sold me my policy did not tell me which things were covered and which were not. It is very similar to having personal dental insurance (another rip off IMO). You only get two free cleanings a year and a couple xrays. Everything else is either "not covered" or "partially covered." I got several bills in the mail telling me "my portion of the bill was ___________" (what ever amount they did not pay). I was a healthy college student at the time and my policy was about $85 a month. I did not go to the Dr much at that time so paying part of a bill was not a big deal. I think the cheaper route would be to take out catastrophic insurance for emergencies and pay for everything else out of pocket.

ash temp angencies are places that place you in a job for a temporary amount of time, it maybe seasonal or if the job has a project to get done or has someone out on maternity leave etc. some times you can end up getting hired full time if the position likes you. What stomagrl is saying is that the agency itself provides you with insurance so ur covered until you get a full time position (which i did not know, i swear she is so helpful!)