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The financial side of Crohn's Disease

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Posted 11/6/2013 3:05 AM (GMT 0)
I know some members are female who do not have to work full time.  But I am a man who has to work full time to support my family.  My wife has a low wage part-time job.  If I become disabled from this disease, I do not believe the SS disability benefits would be enough to cover my medical as well as our living expenses.  Even worse, if I die from this disease (such as from ruptured bowels), I am worried what's going to happen to my family. 
Posted 11/6/2013 3:16 AM (GMT 0)
ok, I'm finding you post sexist and somewhat offensive. But putting that aside, we all worry about that. I guess you can only do the best you can and try not to over-worry about it
Posted 11/6/2013 4:00 AM (GMT 0)
Sorry that I offended someone with my careless post.  That's not my intention.  I am here to offer support for other members and looking for support at the same time.
Posted 11/6/2013 4:11 AM (GMT 0)
I am a female and work full time - I am not at all offended by your comment above. I too worry GentleMan that one day I may not be able to work and the what the financial implications will be on my family. Any disability will not come close to my salary not that I have a huge salary but I have a child's education to pay for and a mortgage.
Posted 11/6/2013 12:50 PM (GMT 0)
Well...I am a female who has to work full time to support my family...husband's business is seasonal and dependent on the economy. Frankly, financial concerns hit whether or not you are the main bread winner. I can not afford (pun intended) to add additional stress to my life, but I do stay in a job I dislike because I worry that I would have to take a huge pay cut to leave and be able to save less for when I can not work. Yes, it is another "symptom" of our disease unfortunately. I just live with the hope and caution to prepare for the worst
Posted 11/6/2013 3:38 PM (GMT 0)
If it helps ease your worries a bit - if you become disabled and qualify for SSDI you are eligible for Medicare regardless of your age after ..... 6 months or a year, I've forgotten which.

An attorney is going to drag out the SSDI process for two years in order for it to be HIS financial worthwhile to handle your case - so be diligent and try to apply yourself first. First and foremost you will need at least one doctor and best if all your doctors, however many, support you as disabled. (Some just plain don't want to be bothered). Multiple doctor visits. Describe your worst days.

It is cheaper for you to gather your medical records than to have an attorney do so. It might not hurt to talk to an attorney who offers the first consult free to try to determine just how "deep" your medical records need to go. (Would a hospitalization record require Nurses' Notes for example?)

Altho the paperwork might look to be overwhelming do NOT procrastinate, get them filled out and returned to SS ASAP & definitely w/in the stated time period. If you haven't been able to get all your medical records by the deadline submit anyway w/the explanation why.

Multiple disabling conditions help but don't claim them if you don't have them.
Posted 11/6/2013 4:27 PM (GMT 0)
*puts KMF on ignore!* >_>

GentleMan, am I going nuts or were you EruditePaul?

And I think almost everyone worries about being laid off nowadays, not just those with a chronic condition. But having a chronic condition really doesn't help either, especially if you are having to push yourself to work while feeling fatigued or in pain. If I can ease your worries on one front: Crohn's is exceedingly unlikely to kill you. Make you live a long and miserable life, yes. Kill you, no. The complication that you mentioned - rupture of the bowels - almost never happens. And if it does happen, then it's usually as a result of a procedure or operation gone wrong - scope perforating the colon or a leak at the anastomotic join.

What's more likely is you getting laid off, and that may happen as a result of illness or as a result of redundancies. Most folks with Crohn's do manage to carry on working all their life. If they need bowel resection surgery, they are usually back at work within a few weeks or couple of months.

So yeah, plan for the future. Put aside some money for a rainy day, lay down the groundwork for claiming disability in advance, and talk to your wife about your fears. Other than that, try not to worry about something which may well never happen. Although... easier said than done. I know.
Posted 11/6/2013 6:32 PM (GMT 0)
NCOT, yes, I am EruditePaul.  I changed to GentleMan yesterday, but I did not know that it would change all my previous post names. 

I am deeply grateful for the overwhelming positive responses from members here.  I have had Chron's for almost 20 years and I do have strictures.  Yesterday, I had one of the worst abdominal pains in my life that I almost passed out.  The pain was so bad that I was thinking if my small intestines burst or perforate, am I going to die that I will never see my kid?  What's going to happen to my kid without his father and the financial support?  From what NCOT said, it appears that the disease will not kill me quickly. 

I am not constantly worried.  But when I had a bad day once in a while, it made me think about the future especially my family.  Members here offered me a lot of support and advice.  THANK YOU, all.. 

Posted 11/7/2013 3:10 AM (GMT 0)
We have a daughter with a chronic illness that's caused her to be homebound and our lives have drastically changed. We are existing, not living, and it's hard to find any joy in our present lives. So I know how you feel. My husband is the breadwinner and his health isn't great anymore either and it gets to him too. If our daughter weren't sick we could handle our health issues much better.

I guess I've been around longer but even in my rural area I know those who have lost their lives, several in their teens, to CD. So yes, it can and does still kill. It nearly killed me. I'm sure there are many reading this who've had close calls. It's a serious illness. When you have dependents any illness weighs heavily, knowing it affects more than yourself. I appreciate your honesty.
Posted 11/7/2013 2:59 PM (GMT 0)
JaSanne, when I read your story, it saddened me and I feel sorry for what your family have gone through.  I hope you stay strong.  I do not live in the city, but I have access to the teaching hospitals in Boston.  Ironically, although I have good health insurance, I rarely uses it for my Crohn's disease, as I have been using herbs for my treatment.  Other member has mentioned balloon-dilation for strictures.  I will look into that.  Thank you.
Posted 11/7/2013 11:07 PM (GMT 0)
I have a whole kaboodle of conditions. Currently, no insurance, and working as a substitute teacher. I was a college professor, but had to quit for a variety of reasons. Luckily, my BF currently pays most of the household support, but I still have bills.

My crohns meds are over 1000 a month without insurance. Luckily, my other meds are generic so semi-affordable.

Financial and health concerns are not limited to men. All who post here have been touched by it.
Posted 11/8/2013 4:30 AM (GMT 0)
I try not to worry about these things. I plan for what I know. While I may end up going down the hill quick, I have realized situations and have been able to head them off without things getting so bad I end up in the hospital. Monetarily, my wife has asthma and is going to need some tests next year. I personally always need Tysabri monthly, which costs 5k a pop after insurance discounts. I have picked insurance plans that some would say would be for healthy, but actually quite benefit anyone with a chronic illness and needs consistent treatment (High Deductible plans, which through my work... has $1k higher in deductible, but once deductible is hit... everything is covered 100%, unlike the standard plan). I budget the needed money to cover that every year, while sizable, it needs to be done. This ends up helping us come out decently in the end... sometimes the "cadillac" health plans aren't really the best....

If I constantly worried about what I would do if I ended up extremely ill, I would not be able to even function as I would have too much worry in my life, which would make me more sick, and so on and so forth... so I just keep truckin' on....
Posted 11/14/2013 8:38 AM (GMT 0)
I'm worried about finances as well I'm a welder and dealing being burnt up all the time which is still such fun but maybe I'm whimpy and new to this but butt pain is different. Kinda hard to do a 60 hour work week when all you think about is pain . very new to dealing with this just now learning to cope with pain everyday.
Posted 11/14/2013 10:53 PM (GMT 0)
We all have those worries. I am a single mother to a three year old and am terrified on a daily basis.
If you believe us woman only have to work part time then you have not met this one.... My job does not stop and my outside support is 0.

Welcome to the boat we are all in!!
Posted 11/15/2013 1:22 AM (GMT 0)
i think everyone worrys about something but you just have to live day by day and hope for the best. my personal fear is that someday when i have my own family my kids will inherit theis horrible disease. it's all in God's hands with what he wants to do...you can't fight destiny i guess but you can sure try.
Posted 11/15/2013 4:24 PM (GMT 0)
I am right there paddling in circles with you Timnlay! Thank goodness for the message boards to help us manage this crap somehow.
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