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Ssdi Experience / Advice Needed

Posted by pdtsomerset, on Fri Apr 04, 2014 9:54 am
Hi All,

   I've had my colostomy for about a year now and have tried to work with this bag as best as I could. I have spent a large amount of $$$$ on finding the right products as my insurance coverage is not the best.

   After consultation with the stoma nurse and Dr. it was suggested I should try for disability. I have a unique issue in that the force at which the product leaves my body is quite forceful due to muscles paralyzed from radiation treatments. Its not uncommon for me to change bags 5-8 times daily if I catch it in time. So you can imagine what accidents are like and the possibility of them occurring throughout the day & night.

   Has anyone applied for SSDI? I hear they are tough. Anyone been to a hearing for this condition. I'd like to know what to expect if it is rejected.

    Thanks much appreciated.
Reply by mild_mannered_super_hero, on Sat Apr 05, 2014 7:24 am
working is always a challenge with an ostomy. very few people qualify for disability simply because they have an ostomy. you must establish that you cant do the job you are currently at, and you cant easily switch to another job. your age might help, and if you have done your profession for 20 years or more that might help also.

i would suggest that you speak with an lawyer and explain your situation in detail. have your doctor write you a brief summary why he thinks you cant continue working, take it with you and discuss it with the lawyer, they will be able to give you a rough estimate of what your chances are.

almost everyone is turned down the first time, be prepared to go without a paycheck for about a year...if you file for disability while you are still working, the declined notice will beat you home.

what was the reason for your original surgery ? have you considered irrigation, that will take the stress off you till you decide if you want to stop working permantley. depending on the govt to take care of you is, in my opinion a "last resort".

you may  private message me if you`d like to hear my personal "horror story" details. best of luck to you.
Reply by Primeboy, on Sat Apr 05, 2014 4:46 pm
Hi PDT. MMSH gave you some great advice. I can only add the importance of persistence in getting a satisfactory response from SSDI. The conventional wisdom is that you will get approved on your third attempt. From our personal experience I can tell you it may help to pester your local SSDI and provide detailed explanations from all the doctors who care for you, not just your GI. Two years after you are approved, you will qualify for Medicare regardless of your age.

It's ironic that our government is quick to provide benefits to so many undeserving but throws unnecessary roadblocks in the way of those truly deserving and in need, e.g., the disabled and our veterans. Good luck.

Reply by Zywie, on Sat Apr 12, 2014 4:09 am

I filed a disability claim after I found out my problems were not hemorrhoids (as I had been told for a year) and found out it was anal cancer.  I was denied 3 times, even though I gave them every piece of paper they asked for, doctors names, addressed and phone numbers.

Three years later I finally was approved.  Only after I called Binder and Binder (I could not afford a lawyer and they said they would not take any money unless I won my case) did I qualify for disability.  It took them a year, but they helped and I was awarded from the time I first went to the hospital for the problems (which was before I was actually diagnosed with cancer).

I didn't have to do much.  I sent them the same thing I had the government, with a long letter explaining everything from start to the date I called them.  They called me for a court hearing a year later.  I went, the judge didn't even ask me any questions.  I was there for about 15 minutes and was told I was being approved retroactive.  

If you are being told you can't work;  you should apply for SSDI (Social Security Disability Insurance) and in that process your information will automatically be sent to SSI (Supplemental Security Insurance).

I was told it also helped that I turned 55 during that process.  I guess the government doesn't think you are employable after that age.  They also told me the doctors records were very explicit, which helped a lot.

One more note:  Some people don't realize you have had to of worked in the last 5 years to qualify for SSDI.  You might want to check with someone on that rule;  I'm not sure if it's from the date of your first diagnosis or if it just means 5 years of work.   SSI does not use that rule.

As the two gentlemen said, it's not easy.

Last edited by Zywie on Sun Apr 13, 2014 11:57 am; edited 1 time in total
Reply by pdtsomerset, on Sun Apr 13, 2014 9:22 am
Thanks so much for your posting. I appreciate it very much. I'm having my state senator's office look into this issue for me as I was told "cutting to the chase" would probably be best.

I'll keep you posted of any updates.

Thanks again as I find it helpful to know others are or were in the same boat.

Best wishes,

Reply by Primeboy, on Sun Apr 13, 2014 10:59 pm
Make your Senator do a little work for you, PDT. The squeaky wheel gets the oil.  PS: this is an election year. Expect some results beyond a response from an aide. Good luck!
Reply by pdtsomerset, on Wed Apr 16, 2014 9:38 am
I will PB.

  I'm also looking at the possibility of his office looking into the regulations/pricing of colostomy supplies. I'm appalled at the prices and the co-pays we have to dish out for these necessities.  Talk about these companies wanting to make up quickly for the time spent on developing products ------ Mother of God. I know the gov't agencies are not looking at this industry close enough.
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