Getting SSDI/SSI and Crohn's Disease, issues and/or problems.

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New Member

Date Joined Jul 2009
Total Posts : 11
   Posted 11/5/2009 3:03 PM (GMT -7)   
I wanted to post a thread about SSDI/SSI and the process of either getting this or denied.

I have posted my trials and tribulations in another threat in the Crohn's Disease topic and I wanted to tell everyone one about the "hassels" you have to go thru in getting your SSDI.

"I just want to give everyone a bit of background about me. I found out I had Crohn's in 1989, Had a fistula removed that destroyed 50% of my rectal muscle. I did have medical treatment back then. Between 1990 to 2004, I graduated from college, then my son was diagnosed with Autism, so I worked a full time (stressful job) and put my medical needs aside to help my son with his autism.

Then in 2004, I became sick, the doctors in Atlanta did three (3) tests to determine that small and large intestines were so diseased that he wanted to do a temporary colostomy (but then he back tracked and he said it would be permanent) but then said that he wanted to try a drug called Remicade. I was able to take this drug for 2 years until I developed severe reactions to it. From 2004 to present, I have had four (4) employers and I had been released from each job. I had these job to 1) provide food on the table for me and my son, and 2) to provide medical insurance for us. I applied for the Patient assistance program for the Remicade and received the MEDICINE for free (what they don't tell you is that you get the medicine for free, but the infusion part was NOT free). I paid the doctor as much money as I could so that he did not refuse treatment. Also, when I did have insurance during this time, the insurance companies informed me that my Crohn's disease was a "pre-existing condition" and it would not be covered under my medical insurance for 12 months. So any medical treatment for my disease came out of my pocket. So not trying to be deceiving, I did not want to tell my employers I had Crohn's disease, so I did not tell them, but they eventually found out and I was let go.

Here in the state of Georgia, its a Hire-at -will/Fire-at-will policy. I could not use the ADA policy because Social Security claims that Crohn's is not a "disability". I have been fighting with Social Security for 5 years now and finally have a court date in August, 2009 in Savannah, GA. Here are some things about the SSA that are discriminatory, 1) they ask you if you made $800.00 or more in a month and you said "yes", they hold that against you. 2) If you have an education, they hold it against you. 3) If you don't "fit" their criteria for IBD's for SSDI, you are automatically denied. Lawyers, well they discriminate also, I had one from Feb. 2006 to May of 2009. I was told by his assistant that they no longer could do my case because there is no "back monies" that they could fight for. So last week I finally found an lawyer, but I don't think that can prepare my case in time for the court date that is in 2 weeks. As for for a husband, my ex-husband dumped me and my son 20 years ago when he found out that my son has autism. Potential suitors discriminate against you because you are sick and that they would "prefer" someone that is "healthy". The folks at CCFA in Atlanta are trying to get documentation that I can take to court. My last medical visit was paid for by my mom and dad. As my life stands today, I have no job, no car (i have to have people take me places), I am staying with a "friend" of a friend (but this is only temporary) and my life savings is gone. I went from a self-sufficient adult that has been reduced to bankruptcy, being homeless, dealing with mine and my son's illness. I want to tell everyone my story this to show that employer(s), state governments and our federal government discriminates against people with IBD and there needs to be something done. I know that I could of done things a bit different with this bout of the disease, but you have to do what you have to do to survive in this world. I would not want the situation that I am in to happen to other people."

I went to my SSDI hearing and the hearing started an 1½ hours later that my scheduled appointment. I was then asked questions by the judge (for which some of them has nothing had to do with my case). I was asked to hold my hands up in the air and "wiggle" my fingers and other "stupid" questions. Finally after 45 minutes, the judge said that he was going to send me for a "state" paid for psychological exam. I received the letter stating where I needed to go and that I was going to receive a general medical exam and psychological exam. On this letter it says that I needed to bring all my medicines and any doctors records and that this would take 3 hours. I go to the designated place for this appointment and the people in that office stated that "this doctor has moved and we don't know where he went to". I called the office that set up this appointment and they said "oh did you not get another letter telling you that he has moved and you needed to go to another facility". I said I did not get this. So they told me where to go. It was 10 miles away in a "community center" . I arrive there to find a hallway full of people, and no where to sit. After 1 hour of waiting, the assistant to the psychologist brings a clipboard to me with a bunch of math questions on them. The I turn in the test and 45 minutes later I get called in by the psychologist. He proceeds to "fire off" questions at me (again to which some of these questions have nothing to do with my crohns). Finally after 20 minutes, he tells me to go wait in the "waiting area". I am waiting in this "area", and the assistant to the psychologist comes out and says that they are "overbooked" and that this is the fault of the Department of Labor for "overbooking" them. A few minutes later, the psychologist comes out and says the same thing. After 1 hour, I get called back to the assistants "area" and she proceeds to to "fire off" questions to test my memory. They she gives me some blocks and tells me to build the design that is in the picture that she had shown me. After 45 minutes of this, I was done. I had to "run" to the bathroom because she would not let me go to the bathroom and of course I had a "accident". My friend that took me to this appointment went up to the psychologist and asked him if he wanted to see my medical records, medicine and background information about Crohn's Disease and he said to him (and I quote), "NO, I already know about Crohn's Disease". I thought to myself , "Yeah right you do, you are a low paid psychologist that are just "pushing" people out to get to the next $75.00 per person fee". I was there for 4 hours and he did not even want to see my medical records or my medications. I felt like a was on a "speed round" of Are you smarter than a 5th grader.

As of today, nothing has been decided and I have contacted the congressman that is helping me and they have not heard anything. They did say, it will take 30-60 days for the psychologist to get the records to the judge and then he will decide. In the mean time, I take a lot of Tylenol to deal with the pain that I deal with and I had to go to the Urgency Care center because I have a kidney infection that I had been dealing with for 1 week. The doctor said that I needed to go to a gastro doctor as soon as possible because the crohn's is making my kidneys and bladder spasm. He did tell me that I needed to stop taking Tylenol because it is not good for your bladder, kidneys or liver. My pain is getting worse and the metradiazole the doctor prescribed me is not helping. The person I am staying said that my son and I should start looking for another place to live because it was getting too much to deal with. I live off of the unemployment that I have been getting since I was "laid off" from my last job in April of 2008 and I only get $788.00 a month.

Now the Federal government and judge holds my fate in their hands. They will decide whether I get health care or not. I do not have faith in the Health Care bill that is currently in congress because we (the people who have pre-existing conditions) will be shut out and the states and health care companies will still find a way not to have health care coverage. I did this topic that because I want everyone to know what you have to go thru in order to get the SSDI/SSI that you have paid into all of your life. I will update everyone as to anything new that is happening on this.
Contact your senators and congressmen to support ANY IBD legislation. We need all the help we can get to combat this disease.

Regular Member

Date Joined Jan 2006
Total Posts : 56
   Posted 11/6/2009 7:47 AM (GMT -7)   
I am so sorry this has happened to you. I am trying to decide myself wheather I should finish college at 52 years old now knowing I may not  be able to work full time anyway. I am sick all the time, most all of my classses are online. I have been advised to file for ssdi. I thought maybe I would be able to get some medicaid through the state since I am a single mother with 2 kids and very low income but they tell me they can't help me because my 401k is considered an asset and I have to spend it first. I saved for 27 years until the manufacturing company I worked for moved to mexico. The last 10 years I worked part time cause I was too sick. Now it looks like I will have to spend it to pay my dr. and hospital bills as I cannot get insurance. I hear all these horror stories of social security and I am worried if I do finish school next spring.They will deny me ssdi because I will now be educated. I don't have a lot of hope for my future. There is not much help for us. I feel like they are saying to us "too bad, it sucks to be you". The powers that be will give money to financial institutions though. One thing positive, the problem with pre-existing illness has been talked about in the news and I hope that will get us some help. Yes it is important that we speak out and let people know what is happening to us. I am sorry for your trials and tribulations I hope your ssdi/ssi gets approved soon.

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 11/7/2009 11:07 AM (GMT -7)   
You may do better to hire an attorney. You may even be able to go before the judge again. You have not put forth your best effort, until you have done so with an attorney, and social security does recognize that.

If not, then you will need to start the claim process over again. Plz don't shoot the messenger. :)

I have won my more recent attempts at social security cutting me off by using medication side affects. Social security seems to really look at them these days.

There is a list of impairments, and CD is on that list, but even if you don't qualify there, you can still get approved.

Later & Good Luck
Humira 2 times a month.
Lialda 2 X day
Imuran 200mg day
Phenergen PRN
Remeron 30mg day
Pain Meds

Veteran Member

Date Joined Feb 2009
Total Posts : 1883
   Posted 11/7/2009 1:15 PM (GMT -7)   
dcham, I am so sorry this is happening to you. Good God, what an ordeal they have put you through!! For sure crohn's can be a disability. It sounds like you had some bad advice and help from a good SSI attorney. Sometimes if you contact your local congress person, they can expedite things for you. Have you tried this? They have advocates in their office for consumers. I live further south in Georgia and I know our rep, Jack Kingston has such people working for him. You should be able to testify in front of our lawmakers who are deciding today about health care reform. It's a sin that in the USA, this is happening. I wish I had more advice. Will keep you in thoughts and prayers this will come through for you.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, benicar
 50 +  female
 colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic.
Blood test positive for Crohn's via prometheus ibd serology panel

New Member

Date Joined Jul 2009
Total Posts : 11
   Posted 11/8/2009 1:59 PM (GMT -7)   
jeanneac, I have contacted Congressman Barrow and his office has been helping me. I have also wrote letters to all the Georgia Senators and Representatives. Mr. Chambless is also looking in on my case. In writing a letter to Gov. Sonny Perdue, well that was a waste of my time. I have had two(2) attorneys. I went thru the Hearing and the psychological exam. I have never exaggerated my symptoms. It is hard to explain to my son (who has austism) about this disease. I was raised with a work ethic that you work hard at what you do and you give it your all. My career has always been in dealing with customers either on the phone or face to face. 10 years ago, I was at the top of my game working in the corporate with all of the perks to go with it. Now I have been reduced to dealing with pain, diahrea, and the daily nausea (amongst all the other problems I deal with). I get nervous and I stress out easily. I just have this feeling that I will be turned down by the judge and I will have to file an appeal (for which I am prepared to do). Our system is funny, If i was a drug user /alcoholic I would get approved in a heartbeat, but for something like crohns, you basically have to be broke, destitute, bankrupt and near death in order to get your SSDI. I don't understand.
Contact your senators and congressmen to support ANY IBD legislation. We need all the help we can get to combat this disease.

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