Is it possible to get disability?

I think I read on here some people did get temporary disability, maybe do a search on these boards.

In the US, it's possible to get SSDI for severe UC, but not easy. The qualifying disability has to be long-term, so diseases that come and go like ours - are more difficult to qualify. You might also consider applying on the basis of your AS, if that is limiting you also.

Generally if your disease if sever enough and especially for a long period of time then one would likely be able to qualify for disability, it's a matter of getting the forms filled out from your GI. Even very severe patients get turned down on the initial application for disability so they often use a lawyer or get a more indepth hand-written letter from their docs.

:)

I feel your frustration, and it is horribly embarrassing to be unable to control a basic body function as an adult. It is a life-altering illness when not in control. But think this through -- if you get your disability you are still suffering a UC flare, and now with less money and possibly less access to good insurance as you'd now be unemployed. And you're now home-bound as you don't trust leaving the immediate access of a bathroom.

Try a different path -- if you've exhausted medications without results, have you considered consulting with a surgeon? I didn't want to hear anything about surgery when I was first dx'd three years ago, but now I am ready to be done with UC. After my diagnosis I had an 18 month flare, was on Pred for two years, had a horrendous reaction to Imuran and finally got things under control with Remicade infusions. Then over the summer the Remicade infusions, which I needed every six weeks as it was, stopped lasting even that long. Fearful of getting another intractable flare while already on the last available medication for UC, I did some serious research on the j-pouch surgery and consulted with a surgeon.

Most of my fears came from reading negative posts on various boards, until I realized that people with poor outcomes are obviously more likely to post, and that quite a few VERY satisfied people were also posting. Doing my homework I learned there is something like an over 90% post-surgical satisfaction rate. I am scheduled to have the first surgery Jan. 12.

I do have moments of fear, and I own and operate a one-person business which I will have to close down while I recover, but I believe I am making the right decision. I want my life back. And when I told my clients about needing to take a hiatus and why, I was amazed at how many of then either had the surgery themselves or had a close friend of family member who did! All reported success except one woman who's husband had his surgery in one step and who said the doctor was neglectful and didn't properly advise them of their options. He has a permanent ostemy but says he is much happier with that than he was living with UC. He gave me a lot of advice upon what to look for in a surgeon and what questions to ask and such.

So, just consider that if medications are not working for you there ARE alternatives to a disability and no life.

Meesh

I'm only saying look into it. You deserve a quality life, not just stuck in your house, in pain, hovering near the bathroom. Work is not the problem.

Boxermom, have your GI get on it. It probably wouldn't hurt for your family physician to try and help you too. I really feel for you. Thankfully, I am retired and didn't work when I was diagnosed back in 98. I had left my job to take care of my two ailing parents (I am an only child). Fortunately, my husband had a good job and a good retirement plan and I really didn't work out of necessity. I don't know what I would do if my health was as bad as it is today. Well, it is improving thanks to the two Remicade infusions I had last month (third one coming on the 31st of Dec).
You are lucky to be alive if you had sepsis. That is what killed my dear friend from childhood on the 27th of Dec of 05. She was a Crohn's sufferer since 84, developed Addison's Disease in 95 and her only complaint a week before she died was a backache. Here, she had a severe kidney infection. Guess she didn't want to go into the hospital before Christmas, but as soon as she started to suffer with back pain, she should have had it looked into. I still miss her dearly. Let me also add that she worked in a bank and deserved to be on disability too.
You are so RIGHT about people receiving disability and not deserving of it. I know of two cases off the top of my head. One person claims to be "depressed" but runs down to Atlantic City weekly and has a blast. The other one receives benefits because she says she has "chronic fatigue". Let me tell you, she took over her deceased son's floral shop nine years ago and runs circles around me. The shop is open six days a week from 8am to 8pm and she never misses a day there. Chronic fatigue my rear end.

JustLiveLife, things can change for a patient so I don't think it's fair for anyone to tell someone they don't need or shouldn't apply for disability, I don't think it's anyone's place to make that kind of statement...this is a very individual disease and for all you know Boxermom may be worse off then many others that are on it. There are likely patients that are on it who were very sick and needed to be on it and then have gotten much better yet likely stay on it (talking long term disability), now that's a whole other ball game.


:)

Surgery can "cure" UC, but not crohn's..with crohn's the disease will just affect parts of the GI tract that are not removed and then there's dealing with fistulizing crohn's so with crohn's it's not an "easy fix" like just getting your colon taken out.

There are those that have severe cases (there's a member on the CD forum called Randynoguts for a reason, muliple surgeries and still very poor off), I couldn't imagine him having to go to work if he wanted to and I'm sure he'd rather go to work than have CD....then there's also the extraintestinal manifestations like severe rhuematoid arthritis and/or severe osteoperosis that can be debilitating in themselves, let alone multiple daily BM's, fatigue, anemia, the list goes on and many suffer with all those symptoms on a severe level indefinitely, so there are definitely many people with IBD that deserve to be on disability because IBD can be debilitating for many.


:)

Many employers do offer short term disability as a job benefit. Often the employee has to pay some amount toward it, and people tend to opt out because it costs them a few bucks a month. If anyone's employer offers this, consider taking advantage of it.

jeanneac said...
If anybody gets disability, I'd vote first for people with IBD. I know people who are on disability who have NO business being there and could easily work. It makes me so angry because I know what I go through and all the others on this forum. It really sucks and makes me mad. The system is so overtaxed from the people who are just lazy that people who are honestly sick get turned down. Good luck to you.

Just think, the people who were in charge of making those decisions will soon be in charge of our entire health care insurance system!

I'm with EvaLou, with UC there's always the option of surgery, and I think people who are suffering and have exhausted medical options should, at the very least, consult a surgeon. I was very against having the surgery when I was first diagnosed, of course. But as time went on and I was on a roller coaster with my UC, the surgical option began to make sense. Only if that doesn't work, and I have thus exhausted EVERY option, would I even begin to think disability.

I was living in MA when I had my daughter and felt it ridiculous to be on disability for maternity leave. I needed my doctor's okay to go back to work, and at eight weeks (I was a single mother at the time, my ex-husband chose that time to abandon me, nice, eh?) I just needed more time. So I was then put on disability. He asked me how long I felt I needed, and I said just four more weeks. Had I wanted more I could have, and with my disability paying 2/3 my salary, and infant childcare costing virtually 100% of my salary, it would have made sense for me to milk it as long as I could, but I didn't. I actually went into debt working as opposed to quitting and going on welfare. This is crazy -- if I went on welfare I would have qualified for free childcare, but I couldn't get childcare while I worked. Every day I went to work while a couple of other mothers in the apartment I lived in put their kids in day care and sat by the pool. But I stayed in the game and in the long run I am sure I am better off.

I'm self-employed, own my one-person business and just finished saving up for a full year to afford the recovery time after my surgery next month. I've worked a very physical job through flares, daily nausea for much of each morning, and chronic fatigue. Basically, I work and I spend the rest of the day recovering from it. But I wouldn't dream of scrapping it all. Instead I looked into other ways to get my health and my life back. I sure hope this works. I know it sounds harsh, and I don't mean it to, but going on disability without exhausting every option available to you for living a complete life, it's just giving up.

Meesh

I know 3timechamp. My employer changes executive directors all the time. The current one thinks he is Mr. Wonderful. I really don't think they understand just how sick I am. It is really hard leaving my area unattended because the residents are wanderers. If they get out the door while I am in the bathroom there is going to be problems. I have been with my job for twelve years and don't qualify for benefits or disability from them. I work just under the amount of hours needed to qualify for FMLA. I would be happy just knowing they would hold my job for me and not be paid but can't even get that. I was lucky with my other flares because my management was really nice. Just can't trust these knew ones. They aren't even sympathetic. I personally don't feel like I am giving up either. I have done pretty darn good these last eight years working and living my life this way.