Community Forum

I have had CD for 17 years and was finally able to get my Social Security Disability in 2005 after being turned down 2 times and attending a special hearing.  CD is one of the hardest diseases to diagnose, never mind treat with all the various cases from person to person.  I have not seen 2 people with CD have the same symptoms.  My half sister has CD and is very different than mine, even down to the foods she can eat.  I wanted to see what are some experiences that people with CD have had with continuing elegibility of Social Security Benefits.  For me, I have found that even when my disease is in remission, it doesn't mean too much, maybe I get an extra day or 2 to function, but still am not symptom free & able to live life like a "normal" person.  For the past year I have had a great GI that understood my pain even during those times of remission, he recently had to resign his practice, so I am at square 1 again.  What has the success rate been with SSD when you have CD?  I can't go back to work cause I am "down" 4-5 out of 7 days, not too good to an employer unless they let me come in on a "GOOD" day.  I am afraid however after fighting for so long for the disability that I paid in to that it will be taken away from me and I will financially be in a bind again along with all the other frustrations of having CD.  Any wisdom of what happens?  p.s. I've also had a 20" bowel resection and still suffer with diareah, bloating, severe pain, cramping, . . . I also take B-12 shots every month for the malabsortion problem.  Thanks

 Reply posted for blntnchrs.

Hi Princess here,

Glad to help if i can I would try to refile again dont wait for them you Doc can reinstate you and you work record would definityly show all the days you have missed due to your illness. Ask your doc to help you tell him you cant work a 40 hr work week or evern 20 hrs Im sure he will help you if you get denid keep fighting eventualy you will win . Just be realy honest when answering the questions . I would love to here how you made out.

Sincerly,

Princess

 Reply posted for princess.

My benefits haven't stopped, but since my SSD went back to 2004, I'm thinking that there is a 5 year recert.  Or is it 7 years?  It is just so rediculous that we have to go thru all of this to prove over and over again that we can't work.  I was just wondering if the recert is as hard as the initial approval.  Do you know?  I haven't received a letter from SS yet telling me it time to recert, but was wondering on the process.

Thanks so much for your help, I truly appreciate it.

 Reply posted for blntnchrs.

Hi there!  I was diagnosed with CD in July/Aug '07 (it's funny that I can't say 'last year' anymore - Happy New Year!) when I was in the hospital for a total of 17 days.  During my second visit, when I had an abscess drained, I ran out of Paid Time Off and was informed that since I hadn't been with the company for a year I didn't qualify for FMLA and since I couldn't provide a timeframe of when I could return back to work they told me they "couldn't hold my position" for me.  Since it was a full time job (my first), I was 'lucky'  to receive 12 weeks of short term disability.  I left the hospital with a PICC line and was on a clear liquid diet for more than a month.  I spent the next couple of months trying to regain more weight.  I then went on unemployment for a tad bit until I was fortunate to find a much better job with a fantastic company.  Our work involves doing consulting work with hotel chains and sporting venues in regards to customer experience.  One of the branches of our services includes mystery shopping which can offer the flexibility of working on your GOOD days.  Please let me know if you'd like further details about mystery shopping (jenbarr2004@msn.com).  

The little bit that I have experienced with disability has been a see-saw adventure.  I hope all works out for the best for you.

Take care,
Jen

 Reply posted for blntnchrs.

hi princess here,

i have been on ssd for 12 years. i to have gonethrough *** with my chrons i have undergone 9 resection which they did take most of my ilium i also had a temperary colostomy bag for 6 months to calm things down. i feel your pain and suffering  i was automaticly put on disabilaty when my doc said your killing youself trying to work all those hour i was a manager in retail and was working 60-80 hours a week i think it was easyer for me because my employment record showed so many jobs i tried to hold and my medical records coinsided with the miss or let go pinkslip you see i was unable to collect unemployment because i was not able and ready to retun to a job. alot of this as you know depends on how things are worded from you doc he needs to state that youwill have this illness for the rest of your life. and that you are unable to work on a sustained daily bases i too was examined by some one from the state and the funny thing was he put down i had gaind 20lbs so he felt i was strong enough to return to my retail job and this was before i told him and my docs told him i was pregnent.go fiquare.so i was deneyed extended benifis until my doctor and my husban wrote a letter to the head of ssd here in ct. a appology was seent and the benefits have continued.i do get a reveiw evey 7 years andd it is a lot of papper work and also it is alot of work for the secratarys so i always sent them something  if you were already on ssd why did they stop it.i do   know you can work and still collect but you are put on a 9 month work trial bases. and them reavaluated after that if you cam handle 40 hrs a week your benifits will stop but the good news is if you become ill you benifits kick right back in.

if you have any outher questions please write back i would love to help you i kind of had to figuar it out as i went alon.

sincerly princess