anyone had luck getting ssi with uc?

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Regular Member

Date Joined Jul 2009
Total Posts : 62
   Posted 7/16/2009 5:44 PM (GMT -6)   
Ive been off work for a year now due to stress and uc. My last state disability check came last month. Ive hired an attorney to try and get ssi. Ive had uc for over 20 years and this is the worst its ever been due to my work environment, i work at a prison. I spoke to an attorney yesterday and she told me to get another job, and that shes never one a uc or colostomy case. She said get the surgery or find a less stressful job and that no judge is going to have pity on me because of the uc or the economy. Im by no means trying to get out of working, im a single parent and have supported myself and children for the last 20 years of my life. Any advice would be greatly appreciated. My gastro has no compassion and told me i can live with the pain or have the surgery. Im not able to take prednisone, asacol, or colazal, ive tried them over and over again and they make all my symptoms and pain worse. I take ativan, bentyl, hydrocodone and ambien. Thanks for any advice and God bless you all!

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 7/16/2009 5:56 PM (GMT -6)

The above is a link to a page on the CCFA website that might help you. I have no idea, but hope this helps.

As for meds, have you tried one of the immune modulators (6MP, Imuran) or Remicade?
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).

Veteran Member

Date Joined Jun 2007
Total Posts : 1539
   Posted 7/16/2009 6:04 PM (GMT -6)   
Do you see a counselor related to your stress? It can help a lot to have a mental health professional provide an evaluation to submit to social security in addition to your medical certification. You will likely be denied up front. Almost everyone who applies is. It's their way of weeding people out, because many people give up at that point. If you can get compelling evidence from mental health professionals to go along with the medical evidence though, your odds of winning an appeal are a lot better.

It may still be a hard sell, but you really need to stay with it to get results from Social Security. If you're truly not able to work, stick with it and don't give up!

Regular Member

Date Joined Jul 2009
Total Posts : 62
   Posted 7/16/2009 6:44 PM (GMT -6)   
Thank you so much for your advice. I havent tried any other meds other than the asacol, colaza, and prednisone and some cortisone enemas. In fact i have been seeing a psychiatrist for depression for the last three monthes, but i still got a second denial even with the psychiatrist notes. SSI said i was denied because i didnt have a condition that would last longer than a year, however uc is a chronic condition and ive had it for over twenty years. I have to make a decision whether to keep pursuing my ssi for another year and a half or try to go back to work the 22nd of this month. Needless to say ive been in a flare since ive found out i may have to go back to work. Thanks for your advice, i have a colonoscopy next month with a more compassionate gastro doctor so im praying he'll help me get this flare under control, possible with the meds you mentioned. God Bless!

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 7/16/2009 8:48 PM (GMT -6)   
If I were in your shoes; I'd opt for surgery.  If your quality of life is so low that you can't work, you will be amazed that surgery will give you your life back.  I have never regretted my decision.
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Regular Member

Date Joined May 2009
Total Posts : 367
   Posted 7/17/2009 9:29 AM (GMT -6)   
I would also change doctors too if he is not compassionate or caring about what you are going through

Regular Member

Date Joined Dec 2008
Total Posts : 79
   Posted 7/17/2009 10:47 AM (GMT -6)   
I have just starte to try and get my ssi myself . My dr has been a great help he seems to think just by how many times i go a day would be enough to get ssi. I guess i will have to wait and see but i also have seizures . Find you a dr that will help you and don't give up.
    Female 37
   20 years of Ulcerative Colitis
  meds,  2 Lialda, 3 Azathioprine, 1 Celebrex, Cymbalta, Mirtazapine,
               TLB ( :

Eva Lou
Veteran Member

Date Joined Sep 2006
Total Posts : 3442
   Posted 7/17/2009 11:10 AM (GMT -6)   
I don't think UC is a qualifying condition for SSI/SSDI. I work in the health care field & have never seen anyone get benefits with that type of diagnosis. It's not your doctor that holds things up, it's the government- there are certain conditions that qualify for benefits & ones that don't, it's pretty simple. I second the surgery vote- if you think you're bad enough off to get disability benefits, what's stopping you from getting rid of your disease?
diagnosed with UC '02
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement

Veteran Member

Date Joined Apr 2009
Total Posts : 654
   Posted 7/17/2009 6:17 PM (GMT -6)   
I think you should be able to get ssi for UC and Chron's.  What employer is going to let you go to the bathroom 10-20 times a day.  I have a neighbor who has never had back surgery.  He has two herniated discs in his back and he is sitting on ssi.  He is outside working on his car and having parties until all  hours of the night.  Now if you ask me he is someone who can work and he is getting ssi and then there are people who really need it who can't get it.  I know he hired a lawyer though.  You might have to do that. Good Luck!

Regular Member

Date Joined Dec 2008
Total Posts : 115
   Posted Yesterday 8:34 PM (GMT -6)   
   I've been on SSI now for 5 years. I was initially turned down, as most people are. I then hired a lawyer and 6 months later I got it.
550 mg. - Imuran daily
     5 mg. - Pred daily
   20 mg. - Prilosec daily
   35 mg. - Fosamx weekly

Forum Moderator

Date Joined Dec 2008
Total Posts : 16447
   Posted Today 9:23 AM (GMT -6)   
I don't know much about this topic but it does make sense to me that if you have severe UC you should be able to get SSI. Afterall, we can be extremely uncomfortable and unable to function in a work environment. On the other hand, if you have good insurance, surgery could solve a lot of your problems. I don't think getting another job would change things too much. I was working at a more stress free job with mild UC and I was still suffering with a lot of symptoms, embarassment and bathroom trips. You can always speak with other lawyers. There have to be others who are more confident.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted Today 4:10 PM (GMT -6)   
Do everything you are required to do, THEN if that doesn't work ask your Member of Congress for help. They can cut through red tape, if you have done what is required of you first. Are you up to it? Find some legal aid group instead of a lawyer, maybe, to help you help yourself.

But if surgery will resolve your disability...I wouldn't be surprised if you can't get social security payments. Can you have surgery?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow

Regular Member

Date Joined Oct 2007
Total Posts : 486
   Posted Today 8:17 PM (GMT -6)   
So sorry to hear all this. Sounds like a very frustrating process for people who really need the ssi and can't get it.
Butterfly, I think that the suggestion to try another doctor is a very good one. there are a whole bunch of medicines you haven't tried yet. I would give them a shot before going for surgery.

I hope things get better for you.
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam, Lomotil
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy

Regular Member

Date Joined Jun 2009
Total Posts : 173
   Posted 7/22/2009 11:57 AM (GMT -6)   
I will join all the others who are recommending you find a new doctor. If you have been out on disability for 12 months and are still not well enough to work then there obviously needs to be a new treatment plan for you.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 7/22/2009 12:06 PM (GMT -6)   
I was a juvenile corrections officer with crohns so I understand about the stress of the job. But I was very open about my disease and able to get accommodations so that I could have constant bathroom access. Have you tried that route? Also, like others have said, I think it is harder to get disability for UC than it is for Crohns because technically UC can be cured by removing the colon. Feel free to chat w/ me about your job in the prison. Were you a CO? And if so, could you switch to third shift? Many people at my old job w/ medical conditions moved to third shift because the job is just a breeze. On third you literally are making sure everyone is breathing every 15 minutes and that is it.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Veteran Member

Date Joined Aug 2008
Total Posts : 5968
   Posted 7/22/2009 1:22 PM (GMT -6)   
     Sometimes the system we have here in the US regarding who and who doesn't qualify for ssi really ticks me off.  It seems as though the people who need it can't get it and the people, like mentioned by WIMO take unfair advantage of it.  Guess it depends on whether your doctor will push for it or not.  I know two people, healthy as horses, who "claim" they have depression and have no problems collecting disability.  One person runs a floral shop and can run circles around me and the other person enjoys the good life, traveling etc..  Something definitely wrong with this picture.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.

Regular Member

Date Joined Jul 2009
Total Posts : 62
   Posted 7/23/2009 6:58 PM (GMT -6)   
Thank you all for your advice and support. I work in medical records at a prison. Im scheduled for a colonoscopy next month one the 7th. I havent ever been hospitalized for my uc. But i can honestly say its gotten worse. Ive had this condition for over twenty years and its never been this life controlling. I honestly am getting paranoid to leave my house. Now im wondering if ssi is going to be stopped completely due to the economy. Im so depressed about returning to work because im so sick but at this point i dont have any other choice. My lawyer is supposed to be one of the best, but now that shes telling me it will be over a year before i go before a judge, i have no choice but to try to go back to work to support my 10 year old son. Please just keep me in your prayers, i feel like giving up on life, but i wont due to my faith and i wouldnt ever do that to my family. Thank you all for being there.

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 7/23/2009 7:33 PM (GMT -6)   
It should not take that long. My brother in law got his in just a couple months (not for UC). Get some advice from your Member of Congress. Really, they might be able to help (of course it depends on the staff person and how much experience they have). Just call their local office, although you might have to call their Washington office. Doesn't hurt to ask, they might even be able to walk you through the process without a lawyer. They have people who just work on "constituent casework" involving federal programs. (Are you sure your lawyer even has expertise in this? Is she a disablity lawyer?)

Don't worry, Social Security is not going to be stopped because of the economy.

Good luck sorry you are so stressed! Be strong.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow

Veteran Member

Date Joined Sep 2003
Total Posts : 660
   Posted 7/23/2009 8:50 PM (GMT -6)   
Hi Butterfly24,ma
I've been on ssi for almost 6 yrs now i'm 37 now. It took me a few times but I did get on it. I was so sick that my doctor was kind enough to put the request in for me. I live in MASS. USA. It may depend on your state or country maybe on the requirements to get on it. But if you are sick enough talk to your doctor and it will take a few times for them to except you.
Good luck
kepe us posted.

~~ Donna ~~
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)

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