Just wondering.. Has anyone else applied for social security disability for having chronic pouchitis? I have had my jpouch for 5 years now, and have had a lot of issues with my pouch. I had to quit my job last August because of just not feeling able to work anymore.

I applied last August, but was denied, and am wondering if I should re-apply. Am I supposed to ask my doctor to write a letter about it?? Not sure what to do...

Unless you have a very obvious disability (such as a stroke) I think the standard of practice for SS is to deny the first application. I definitely would appeal. You may need to get a SS attorney to assist you. Getting documentation from your physician will probably be necessary.

Also, understand that SS disability requires you to be totally and permanently disabled (disabled for at least one year). So, if you are able to work at other occupations than your previous occupation, you are not eligible for SS disability benefits. http://www.ssa.gov/dibplan/dqualify4.htm

Jan

Its almost a given to be denied the first time, but if you can't work, keep at it. Do your doctors support you? This is very important, you need as much documentation as you can get, and sorry to say, but mental health issues seem to get pushed through easier, SO, if you've suffered depression due to this illness, PTSD, whatever, submit as much info as you can gather. Pretty much you have to prove that no one would hire you. If you can find a disability advocate to help you even better, I was fortunate to find one and did not need to hire a lawyer, they tend to require a large percentage of your backpay...squeaky wheel gets the grease, squeak all you can.
LoriP

Well if you cant work permanently due to the pouch and its a chornic problem isn't better to just get rid of the pouch that unless you have other issues. I think people fight too long with pouches that dont work, you get the pouch to be healthy .... if it giving you problems then we haven't really solved anything

I'm not sure about what RMD deals with, but in my case chronic pouchitis is a small piece of the puzzle.....removing the pouch would not be a benefit.
LoriP

I qualified for disability based on pouch issues, such as chronic incontinence and pain issues, and the fact that with such disrupted sleep it would be impossible to hold a job. By all means try again, or protest the initial denial. Then, yes, find out what issues they had difficulty with and engage your doctors in your battle for benefits.

I, too, would likely face a more restricted and hampered lifestyle if it were not for the j-pouch, no matter how much trouble it is. My surgeon will do everything possible to help me keep my pouch.

Best of luck to you. Not working anymore is a downer, but not as bad as facing the wrath of an employer who lacks empathy or understanding when it comes to digestive disorders.

I hired a disability attorney. She received a small payment which was set by the courts. It took 3 years and I was denied 3 or4 times and finally won it on appeal in front of the judge.
The kicker seemed to be the letter my Dr. wrote about my depression and how this disease has affected me and my family.
If you are suffering from depression you really need to see a prefessional for help, it will help you and your case.
Craig

Yes If the pouch is a piece of the puzzle then thats a totally different story.... If people have problems with the loop ileostomy though, the end ileostomy is much better.... so there are options

There are options, as you say Eric, but not everybody wants to take the option of removing the pouch. Apart from the fact this entails further major surgery, not everybody has the same attitude towards issues of body image etc. For some people the issues can be much more damaging. Also, an ileostomy does not always mean the end of problems - any major surgery can theoretically trigger further complications. Bear in mind too that some surgeons are extremely reluctant to remove pouches.

I encountered a lot of trouble finding a surgeon who agreed that my pouch should come out, but not because of any medical reason. When I pushed them to tell me why, MEDICALLY, other than the major surgery issue, I should keep the pouch, it all came down to their own issues iwth ostomies. Unless there clear medical contraindications to pouch removal, a surgeon's reluctance should not be a reason to give up this option.

Personal feelings about ostomies, that's another issue and for sure a very personal one. For me it came down to being young and wanting to be able to live my life as normally as possible and the ostomy allows me to do that. Otherwise, I probably would have come to a point where depression and other issues would have necessitated disability.

It is standard procedure to be denied the first time one applies like Jan said.What you need to do is get a letter from your doctor that is concise to the point and very convincing that you suffer all these problems and that in his or hers opinion you are no longer fit to hold down any kind of job.I can`t stress enough how important this letter is to your appeal.That is how I got my acceptance the second time around,I have been on disability now for 5 years.Don`t give up keep at it if you truly feel you can`t work any longer,fight for your rights!One more thing if you have become depressed because of all of this you would be wise to mention this to your doctor and have him refer you to a phsyciatrist(sp).They look at depression quite favourably at the disability office.Good luck and take care.

Get a lawyer - mine was approved today ! the judge had made up his mind as soon as he read my file - everyone said it is so hard to get disabilty, that i'm to young (30) - but they were wrong and it was so easy. I cried leaving the office becouse i tried so hard to play keep up with the world and just wish i would have done this 14 years ago.
my doctor wrote a great leter and the lawyer fills out the paper work - it is not what you say but how you say it.
there is no upfrount cost the lawyer get a percent of what you recieve. and then you can get medacare.
it takes a long time to get your hearing appointment 1-3 years so don't wait.

Thats great amyz, I am glad that ordeal is over for you!
Maybe you will feel a little better now, if you don't have to push yourself to keep up.
LoriP

I recently applied for Social Security... According to the Department of Veterans Affairs, I am 100% disabled...

According to the Social Security Office, they don't have enough information and have set up Doctor's appointments.

I really hate the whole process. Two governent agencies should have the same guidelines..

Do I want to work, YES.... But the only time that I haven't had bloody diarrhea is during the time that I had the ostomy bag... Right now, I have severe rectal pain... I have learned to live with the 12+ bloody bowel movements, but the pain is difficult to deal with.... I want to scream and yell... Sometimes I want to punch the wall when sitting on the toilet... Sometimes my BMs are loud.. A few weeks ago, some little kid was in a restaurant bathroom while I was doing what I had to do.. It was loud and he started laughing about it to his dad.. I came so close to saying a few "choice" words.(sorry had to vent)...It's so frustrating..

Applying for Social Security was hard for me to do..Sometimes I feel a little guilty for applying, but usually within 30 minutes of feeling guilty, I am laid out in the fetal position from the rectal pain. It's a roller coaster.. Feel great one minute, thinking "WTF" the next.

Good Luck with your claim..

cass

I was wondering what happens if a doctor says that since you have chronic pouchitis, I think you should get a ostomy pouching system (colostomy) before I would back you for a disability. Can they force you to have that surgery & say that that will cure your pouchitis, before considering you for disability benefits?