What's wrong with our government that Crohn's isn't recognized as a disability

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Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 10/28/2008 7:10 PM (GMT -6)   
All they would need to do is read our posts and realize that we are really truly sick! Instead of, can you lift, how much of your day do you lift?  Seriously, it's sad.  You guys are out there working your butts off and you should be home resting those butts.

FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 10/28/2008 7:16 PM (GMT -6)   
Crohns can be a disability and is covered by the ADA. What makes you say it isn't?
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 also take a birth control pill to allow some fun in my life.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6923
   Posted 10/28/2008 7:17 PM (GMT -6)   
Yeah it is a disablity in fact I think we have people on here on disablity for crohns.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


GentleMan
Regular Member


Date Joined Jan 2006
Total Posts : 249
   Posted 10/28/2008 7:49 PM (GMT -6)   
Having a mild or even moderate Crohn's woudn't qualify you into the disability category.  You need to have a severe case of Crohn's such as mutiple sugeries and a large part of intestines removed to be call be "disabled", I guess. 

Diagnosed with CD in 1994;

In 1994 I was treated with Pentasa of no avail.  Have being treated with Chinese herbal medicines for over 10 years.


patientspiders
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Date Joined Jul 2005
Total Posts : 729
   Posted 10/28/2008 7:55 PM (GMT -6)   
The ~severity~ of your crohn's is what does or does not qualify you for disability in the U.S. It has no relation to how many surgeries you have, rather it is determined by how severe crohn's inhibits your daily functioning. As others already stated - it has to be a pretty severe case, which is stupid - because everyone knows that we can have good days and bad days and they aren't always in a row! I receive disability for crohn's, and I know that my doc was instrumental in getting it, and that I am fortunate to have gotten it so easily because I know many who need it and are denied. My conclusion is - no matter HOW bad your crohn's - you have to have a good GI who will understand and back you up when your application is reviewed.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6923
   Posted 10/28/2008 7:58 PM (GMT -6)   
I think it also has to do with low body weight.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 10/28/2008 8:26 PM (GMT -6)   
Sometimes i think alot of people would love to be working even when flaring. But the workplace makes it so hard, it almost makes it impossible with bathroom locations, office politics, embarrassment, etc.
SCD since 01, remission since 01, occasional Arby's breaks :)


wowkriste
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 10/28/2008 8:35 PM (GMT -6)   
Hi I'm Kriste and i live in shreveport, Louisiana. After the doctors put me on methodone years ago I was approved for disability. There was no way I could drive or even function being on that med. I did all the paperwork and once I was approved I got off methodone. If you cant take care of yourself how are we going to work for ANYONE??? We cant work around the house and keep it clean half the times. Keep tring but yes if pep only knew what we went through with our problems they WOULDN'T DENY US!!

sully
Regular Member


Date Joined Oct 2008
Total Posts : 27
   Posted 10/28/2008 8:57 PM (GMT -6)   
definitely sucks that our disease is considered "on the fence" for disability coverage....according to the ADA and the disease list on the disability application website, we should be covered, but still they give us a hard time.....I have my ssdi phone interview next friday, i hope i get approved, not sure what i'll do otherwise, luckily i do have support from my family financially for now, but thats not going to last forever....anyway here is some info my bro dug up for me, showing that diseases such as crohns that go into remissions and flares should be covered by law:


**********
I have edited your post. Please do not cut and copy from other places on the internet, as it can infringe copyright. It also places undue strain on the HW server. Just provide a link and tell people what they're linking to, and that should be enough.

Kindly,

Ivy.

Post Edited By Moderator (ivy6) : 10/29/2008 2:04:14 AM (GMT-6)


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 10/28/2008 10:15 PM (GMT -6)   
I agree that the disability process can be really irritating and sometimes it seems to make no sense. I just wanted to let you know that it isn't just crohn's patients that have a problem getting it. I know several people that my agency works with that have been denied disability and can not work. One has crohn's, and he doesn't have insurance because he can't keep a job long enough to get it, because he ends up sick so much. He has had trouble with disability because he doesn't have a primary doctor with all his records, he sees whichever doctor the er has or sends him to temporarily, and there is no doctor to help with letters of explanation. It's really sad, he's started self-medicating with alcohol and other things and he is going downhill. I really wish they could fix this whole healthcare/disability system so it would really help people instead of just adding more and more stress to their lives. Sorry, I got off on a tangent there! I wanted to say that there are people with back problems, other auto-immune disorders, emotional disabilities, mental health issues, even developmental delays that have to fight for disability.
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, entocort, vicodin as needed, Humira, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Active disease back, darn it 8/08. 11 year old son with IBS-C, on Bentyl.


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 10/29/2008 12:57 AM (GMT -6)   
I have dissability and I'm only 22...had it since I was 18 when I started having my surgeries. Sometimes I don't even know if its worth it cause its a HUUUUGE help, but in ways it kinda messed up my life a bit. First of all its such a pain every single year to RE-do/re-fill all the forms, and its not so much the forms that bothers me but getting docs to fill them out. Its like here you go to a doc to get better and they put you in remission and then next thing you know you're asking them to covince the gov your dissabled. I mean, what are they suppose to think? Maybe its all in my head but I'm just so embarrased.
Also, I went to school and got my degree to be an MA but realized that it was too much of a risk after all I had been through to actually recieve dissability to give it up for a job I will most likely not be able to keep.
Dx w/ UC 2000;
J-pouch surgeries in 2002 - colon removed except for last tiny part connected to rectum which keeps inflaming;
Currently in remission from August hospitalization and tappering off Pred. (now 7.5mg);
Remicade, Cymbalta, Prevacid, Famotadine, QVAR,
Auto-immune disorder, anxiety disorder, mild asthma (chronic bronch), & Crohns related arthritis.

Jessi


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 10/29/2008 1:55 AM (GMT -6)   
Who told you that the government (I assume your are talking about the U.S. government) does not consider Crohn's disease to not be a disability? This is simply not true and needs to be corrected with that person. I am on S.S.D.I. for Crohn's disease and am considered disabled by the U.S. government. It was not an easy process to get approved, but I was approved after the first appeal and have not had a problem with them since. In fact, I have been treated better by the Social Security Disability people than my Work disability people. I was also approved for full medicare and prescription part D benefits if I wanted them. As for the weight factor being part of the equation, that is also off because I weigh 200 lbs and am 6 ft, so I am not very skinny or overweight.
The major factors in getting approved are how this disease has taken away your quality of life and what steps you have gone through and failed in getting this disease under control. Before I even applied for SSDI, I had been under my work long term disability for 3 1/2 years. I have had 8 surgeries during this time, but not one was a resection or anything to that someone would automatically recognize as a Crohn's surgery, even though all were Crohn's related. It also helped to have all of my doctors on board with me and recommending that I apply for S.S.D.I. before I applied. Do not be discouraged if you are turned down your first or even first few times that you apply. This happens to almost everyone, in order to weed out those that are just trying to work the system. If you have the option of working with a law firm during the process, I recommend it. These people may take some of the money that you will get in back pay, but they know what they are doing and at least you will get approved.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2179
   Posted 10/29/2008 2:29 AM (GMT -6)   
I think what also makes this hard is we usually come down with this young. If you didn't get enough working years in to even qualify for disability, what are you supposed to do? That is what has happened to me. I got this at 20 years old. I only got a good 3 years of working in there. I had stayed at home with my son, and then decided to go back to work when he went to school. I did 3 years before I got really ill, and flared big time. I do better at home, without the stress, without the getting up super early (morning are bad for me!), where I can use a bathroom whenever I need to, and for how long I need to. But I don't qualify for anything, and I doubt they'd even consider me sick enough. Which I think is a joke. I've known people with a lot less of a problem get disability quite easy. It shouldn't depend on weight, or surgeries either. So I think it's really awful that they make us jump through so many hoops, and if you were unfortunate enough to get this young, you don't even qualify anyway!

I'm very fortunate that my DH makes enough to support us, without my working now right. Otherwise I have no doubt that I'd probably be having some surgery, or on harder medications.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 10/29/2008 3:38 AM (GMT -6)   
Oh Dear, it sounds like alot of you guys get it hard with your benefit system. I am sorry to hear that, I haven't tried for it in the UK, but they have recently changed the process here. It nopw asks what task you can do instead of what you cannot. I know, it is stupid to ask these type of questions to people that are ill and can just about manage to get out of bed in the morning.

I really hope that you guys have more luck getting the benefit and can then start to look into your own recovery.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/29/2008 6:39 AM (GMT -6)   
Hi I agree that people who have enough to cope with should not have to be living there lives half dead worrying about money. I think this is something the CCF should be doing more about. There are people here in Nova Scotia that made nasty comments in the paper about people with crohn's getting social assistance. It is to the point sometimes I feel that others would or try to take our right to life from us. It is hard enough to live with without the garbage that people throw at us. I think there should be changes made in the rights of people that have health issues ,that have already taken away, our right to work and live a life that is not discrimated against. We need better protection in life then what we have. No person should have the right to get on the newspaper and discriminate against people with crohn's this is a issue that I have been dealing with this week as I seen some nasty comments in the paper. The government should not be allowing that sort of thing. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 10/29/2008 6:44 AM (GMT -6)   
gachrons, well said.EXCELLENT point! If people without the DD had it, I would love to see them write to the paper and say the same things. I bet when they get the flu they be off for a month of benefits an all.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/29/2008 10:20 AM (GMT -6)   
Well I got carried away actually what was happening is that people are posting comments about a woman who has CD and was interviewed about a 4 dollar raise in social services and the article was in the paper,and some people posted comments about it some of the comments were very nasty. I didn't know others were so critical about someone who has crohn's disease. It is very degrading to see such mean stuff .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2179
   Posted 10/29/2008 12:16 PM (GMT -6)   
Those comments would upset me too, what is wrong with people? I think there just isn't enough awareness about IBD out there. Just based off my own personal experience, a lot of people think it's just like IBS. Or that it's mild, and no big deal. They just have no clue about what we go through.

My DH was talking to someone he deals with for work just a few days ago, who had just had surgery in August. He had just mentioned it was bowel surgery, for UC. So they got to talking, and I think it even made my DH understand things better. He's seen what I go through, and is really great about everything. But hearing about it from someone else, and how they have gone through all the same stuff (mis-diagnosis, numerous doctors, complications, medications ect...) really made it hit home for him I think.

I think we somehow need to get the message out more.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/29/2008 5:10 PM (GMT -6)   
Crohn'nsme Sorr i didn't mean to hi jack your post. Just been a little discouraged lately after I read them post. Wishing you all the best.

Jen thanks great to get some support on this subject .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 10/30/2008 11:03 AM (GMT -6)   
Crohn's is a recognized disability in Canada. But just like the US, some people have more difficulty getting disability. I think what throws people off are the questions on the forms that ask what your abilities are. The best way to deal with these questions is to think of what can you commit to doing on a regular daily basis.

Like how much weight can you lift? Think of the amount you can lift no matter how bad you feel. That's what you can commit to.

Another way to think is being at a job interview and flaring with CD. If you told the interviewer that you had crohn's disease and it was flaring presently, do you think they will hire you? Not a chance. They know your health will affect your performance, attitude, etc. It's just the way it is with a serious chronic illness.
 
When answering questions on forms, don't sugar coat or be wishy washy. If some days/hours are better than others, you must go by the bad days/hours because they are the ones that will intefere with your job and daily living.

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 350
   Posted 10/30/2008 3:59 PM (GMT -6)   
This is all great info. If my body won't let me work even the 16 hrs I'm doing now and since I can barely move my arm, I've only got the one arm. If it gets down to it, I was afraid of being denied. Which says nothing of self-esteem. I'm afraid of the system. It never seems to be working for me. Always its against me. I'm 27. I'm not even sure I've worked 5 straight years (illness and college). I WANT to work but some days, it's so hard to even move. I've had two resections, lost my R fallopian tube, my gallbladder, my appendix, and had two drains. With whats going on with my hips and back and knee, I'm afraid my days are numbered. I don't want to drain the system but honestly, every day for the past two months, its been hard as hell to get out there and work. So, if it comes down to it, I'll keep it in mind, the things I've read in this thread. Thanks
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


sleepydacarebear
Regular Member


Date Joined Feb 2004
Total Posts : 106
   Posted 10/30/2008 5:04 PM (GMT -6)   
Honestly, I didn't read everyones replies.
 
I just wanted to let you know that I am currently receiving SSDI/SSI due to Crohn's. I went ahead and got a lawyer before I applied or anything. They denied me 2 times, and then sent it to an appeals court with copies of my medical records, or should I say medical NOVELS, lol. Having the attorney take care of the little things I didn't understand was WELL worth the money. It ended up costing me about $765.00, which was paid out of my back-pay.
 
The catch with all of this is that you can't be disabled AND working, which is crap if you ask me. I was thankful enough to have enough savings and large enough credit limits to get through it all. In this economy, I don't know how a regular person would do it. My mother helped me ALOT, too.
 
The main thing is to BE PERSISTANT! (sp?)
 
They deny EVERYONE the first time around. It's so darn frustrating though. I'm sorry you're having to go through this, but know that there is hope.
 
If it would benefit you, I can try and dig up my legal paperwork so you might be able to use it to your advantage.....
 
Best wishes,
 
~Sonia~
 "People who mind don't matter, people who matter don't mind." ~ Dr. Seuss
 ~Crohn's Disease~
~Fibromyalgia~Anxiety/Severe Depression~Migraine Headaches~Rhem. Arthritis~Reynauds~PTSD~
 ~Crohn's Dx'ed at 17 (2004), Multiple hospital stays, every test there could be (as we Crohnies know!) Taking Pentasa, Purinethol, Nexium, Neurontin, Cymbalta, Trazadone, Prazosin, Xanax, and Vicodin/Bentyl (prn Pain)~
 D.O.B. 7-15-1986
 Next adventure: PHARMACY SCHOOL!

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