crohns and disability

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lostsoul36
New Member


Date Joined Dec 2008
Total Posts : 14
   Posted 1/2/2009 10:55 AM (GMT -7)   
Just wondering if anyone has applied for disability....has anyone been able to get it with crohns disease? please tell me your experience with disability process and if any of us have a chance of getting it. I have been sick with my last flare-up for over 4 months and not getting any better. I lost my job in september. I filed for disability in october, but from what i have heard so far, it is a waste of time and could take up to 2 years. any stories or advice would be appreciated. thanks
confused  

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 1/2/2009 11:39 AM (GMT -7)   
Welcome lostsoul

I have gotten my disability but that is here in Ontario Canada
I also have pyoderma Gangrnosum but was given the disabilty on both
For me it took a long time
2 times denied and they give you a lawyer here also and on 3rd time I was approved right there
I ended up with over 10,000 back pay for the time it took to get it
I have heard others here talk about the system there I do hope they will get to you soon
The holidays are slower as are wknds
BUT the members are great with their advice and input

LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
    CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            ~ FIGHT the FIGHT with all YOU HAVE ~
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
..........LYN


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 731
   Posted 1/2/2009 12:40 PM (GMT -7)   
I'm in the states, and I had no problems getting disability. Many people have problems getting approved, but I was fortunate... the dates are a bit hazy, but from what I remember, I applied for disability in September, and received it in December I think... I did not have a lawyer or anything special. Just a really severe case of crohn's. I know I had my doctor's full support as well, which may have helped move the process along. My disability was even retro-active to the date I was diagnosed, so that helped me to pay down some of the medical bills I had collected.

My best advice is to get on the same page with your doctor. Make sure he knows how much you're suffering and how hard it is for you to function at times. And don't hold back the nitty-gritty stuff on the application. If you have 15 bowel movements a day - tell them. If you spend a lot of money every month on over the counter meds like tylenol or immodium - tell them. Every little bit helps your case.

Good luck to you!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

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


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/2/2009 2:57 PM (GMT -7)   
I'm on disability in Canada. I applied in February and was approved in May.
Belleenstein:

30+ years living with Crohn's.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 1/2/2009 4:00 PM (GMT -7)   
Had no trouble getting it, in fact first try. I was old enough that they term me not retrainable, this means for the money they spend on retraining me in a new profession I would not work long enough before I was retirement age, so the older you are the better.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


lostsoul36
New Member


Date Joined Dec 2008
Total Posts : 14
   Posted 1/3/2009 10:30 AM (GMT -7)   
Thanks for the replies...any stories or advice are apprecitated. I have multiple abscesses and a fistula. right now i have one of those abdominal pump catheters in(for over a month now)they moved it to the other abscess and then the first one came back. i am doing remicade treatments,antibiotics, and we are hoping the remicade will close off the fistula...it is taking a long time.  getting frustrated, thinking we will have to do surgery soon. i am worried about the disability thing. i dont have 2 years to wait, and the bills are piling up. i have very good documentation, i keep a daily journal of how i feel and how this affects my life, and my doc is behind me, but even so it can take a long time. i am only 36, so i am sure they will fight me. i have a company working for me that deals strictly with helping people get disability, but it just takes so long and i dont have any options right now. anyhow, i'd like to know from you all if you have any remicade stories or if you have taken something else that helped get rid of abscesses/fistulas. mine is in the lower left abdomen area. 

s31
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/6/2009 11:23 PM (GMT -7)   
 sorry im new to ths stuff. I'v had C D for about two years im on Pentasa 8 mg, Prednisone 40mg, Entocort 9mg, starting Humira tom. and all sorts of other meds too. I'v been out of work for almost 6 months now. I just applied for ssi in dec will know more in feb. It was really easy, I'm not sure how that makes me  feel. I can teel you that taking care of my toddlers is getting really hard with all the side effects of the meds and the CD. I'm at my wits end  smhair     it just seems that no matter how hard I try the CD  gets the btetter end of my life and is running away with it. but any who if anyone has any good ideas or other ways to look at this please don't hesitate ( sorry not very great at this typing or spelling thing but i"m tryin)  smilewinkgrin

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 1/7/2009 12:45 AM (GMT -7)   
I would be more than happy to walk you through the steps of disability and be a support to you. It is not easy. But we, very sick ones with Crohn's DO deserve disability. Send me your e-mail if you feel comfortable and maybe we can do it that way. Good Luck. Lovepink!
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


HannieBell
New Member


Date Joined Jan 2009
Total Posts : 11
   Posted 1/7/2009 3:01 PM (GMT -7)   
Hey there,
I received disability back in 2001 for Crohn's because I could neither work nor go to school for awhile. I started back to work in 2005 and THEY ASKED ME TO PAY $2000 BACK!!! Beware, even though your tax dollars go to SS, the government will try to get you to repay= not cool!

lostsoul36
New Member


Date Joined Dec 2008
Total Posts : 14
   Posted 1/7/2009 4:17 PM (GMT -7)   
lovepink-I just started the disability process in october, and i have been really sick since i had a flare-up in august. i've had a bowel obstruction, patches of inflammation on left side of abdomen that turned into multiple abscesses with a fistula. i have had an abdominal pump catheter in for 35 days and it hasnt worked, so now i have to go in on monday and have the resection surgery and another hospital stay that i cant afford. i got let go from my job shortly after my flareup started and have been immobile for over 4 months. i am hoping that the surgery will help and i also will be continuing the remicade. i have only had 2 remicade treatments so far, plus the prednisone,antibiotics and asacol. i was diagnosed with crohns 4 years ago. as far as the disability goes, i know it will be a long road. if i dont get it, i dont know what i will do. i have no insurance and no way to make money. my mom and i live together and she is taking care of things now, but she doesnt make much money , so i have to find a way to make money.  i have felt like crap for so long, i just want to get my life back. thanks for the reply. i would like to talk to you, but i dont feel comfortable with posting my email address. i have had bad experiences with that in the past. if you feel comfortable giving me yours, that would be great...otherwise we can talk through this site. i'd like to know more about your situation if you care to share. thanks again.....J 

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/7/2009 6:20 PM (GMT -7)   
lostsoul, don't sugar coat your symptoms/issues on the apps. Tell it the way it is and don't be wishy washy.

best wishes.

lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 1/7/2009 6:21 PM (GMT -7)   
That is very, very important. Do NOT sugar coat anything....... Be real and mention EVERY LITTLE DETAIL, etc.

LOVEPINK
I have had Crohn's since I was 21 years old and I am now almost 28....

I am currently on Prednisone and have tired literally every drug available.

Unfortunately, nothing has worked for me. But I will keep on going and trying everything possible!

Also recovering from a blood clot in my lung and of course the blood thinners really messed up my bleeding from my Crohn's....


lostsoul36
New Member


Date Joined Dec 2008
Total Posts : 14
   Posted 1/8/2009 11:24 AM (GMT -7)   

I have done my homework, and yes i never sugarcoat anything. i have a daily diary of symptoms and side effects and how it affects my life. i have documented everything...being very organized this time.  i have sent them so much paperwork that they will be informed as best as i can do. i also have this company working for me that deals exclusively with disability cases, so i am hoping they will get it done. i also have good doctors/therapists that will write in depth reports on what i have been going through this last year. i go in monday for a bowel resection. the drain catheter that has been in for 36 days now isnt working to get rid of the abscesses/fistula, so doc decided its time to do the surgery. i will continue on the remicade afterwards he said. hoping this will work, because i am really tired of all this and this catheter sucks!!!!thanks for the replies and advice. i know disability is a long process and i have to be persistent....but you are right about the sugar coating....i probably give more detail than they can stand. i am in for the long haul...wish me luck.

i will be in the hospital a week, so i will keep you posted after i am back home..............good day to all!!!  


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 1/8/2009 11:58 AM (GMT -7)   
I'm still fighting for mine, I had a crappy DR that said I could work... But I'm still fighting If you stop and start again they don't have to pay back pay.....


Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,off crestor,now pravastatin,off humira, pristiq, abilify,
Dx Bipolar May 08


s31
New Member


Date Joined Jan 2009
Total Posts : 4
   Posted 1/8/2009 8:45 PM (GMT -7)   
My e mail is sheila30@tmail.com I would love to chat with u I need to know that ilm not alone as cheesy as that sound my husband is only able to understand so much

pitta905
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/5/2009 2:22 PM (GMT -7)   
Hi all,

I've been diagnosed with CD 3 years ago, and my MD suggested I apply for 'disability'. I live in Ontario, Canada and was wondering if anyone with experience could point me in the right direction.

Where/how do I start this process?

Any advise appreciated! THANKS!

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 317
   Posted 5/5/2009 8:17 PM (GMT -7)   
lostsoul36 said...

I have done my homework, and yes i never sugarcoat anything. i have a daily diary of symptoms and side effects and how it affects my life. i have documented everything...being very organized this time.  i have sent them so much paperwork that they will be informed as best as i can do. i also have this company working for me that deals exclusively with disability cases, so i am hoping they will get it done. i also have good doctors/therapists that will write in depth reports on what i have been going through this last year. i go in monday for a bowel resection. the drain catheter that has been in for 36 days now isnt working to get rid of the abscesses/fistula, so doc decided its time to do the surgery. i will continue on the remicade afterwards he said. hoping this will work, because i am really tired of all this and this catheter sucks!!!!thanks for the replies and advice. i know disability is a long process and i have to be persistent....but you are right about the sugar coating....i probably give more detail than they can stand. i am in for the long haul...wish me luck.

i will be in the hospital a week, so i will keep you posted after i am back home..............good day to all!!!  

Hi LOST how are you doing now? First of all i had both abscesses and 2 fistula's for almost a year and a half of drainage and pain but as soon as i started my Remicade they were able to take out the sionet and it was gone for good healed completely and knock on wood i never got one back since.Your second question about getting a disability it can take a long time how ever it sounds like you have all your eggs in your basket and the support of your doctor that is the most important thing really,they like to see all your tests,blood work,cat-scans,ultrasounds,scopes reports from specialist E.T.C once they have all the info they need they will make there decision if for any reason you are denied which with all your health conditions i can't see it but if you do you can always appeal it i got my disability the first time around it took about 3 months ot get my first check and i was 24 at the time i also live in Canada here i don't think you get the back-pay if you do I'll be calling someone cause i never got mine i hope that is something you were looking for LOST and I'm so sorry to hear that your going back to the hospital soon for your bowel resection good luck feel better soon you have been through a lot its your time to relax for sure and like i said i can't imagine why you wouldn't be eligible for your disability. Jenn smilewinkgrin idea nono
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


BostonChronie
New Member


Date Joined Feb 2009
Total Posts : 12
   Posted 5/12/2009 9:02 AM (GMT -7)   
Hi LostSoul,
 
I was just recently approved for SS disability. It took nearly 4 months for the process. I had the support of my doctors (GI, surgeon, pyschologist) and made sure they were in my corner the whole way.  I agree with others about being very specific about your issues. If you use the bathroom 15 times a day then be sure to emphasis that. Tell them its difficult for you to go anywhere unless there's a BR within a short distance. I also have short bowel syndrome, so I'm on TPN, which I think made the decision go more easily. Also, I did try to go back to work last fall, but was unsuccessful: I worked for 10 days and became so weak and sick that I landed back in the hospital. Make them understand that your life revolves around your BR needs and that you are very limited by it and are not functioning fully as a result. If you are often in pain they need to know that. Don't hold anything back.
 
I was very unsure about getting approved for this benefit and am most grateful for the approval. I've been out of work for over a year now and my savings are pretty much gone. I do have Cobra through my prior employer though, so at least I don't have to worry about most of my medical expenses. I just found out that I can get a Cobra extension because of the disabiility approval too.
 
Keep thinking positively. If by chance you aren't approved the first time around -- file your appeal immediately! I've read that many patients are approved the 2nd time around. All it takes is a judge with a level head to understand you need the assistance.
 
Best of luck...

a/k/a Laurie. Living with Crohns since 1968. Too many surgeries to count. Total colectomy with ileostomy. Took Imuran for many years, but recent flares have required Humira Remicade. Cimzia.
 
Current meds: Tincture of Opium, Lomotil, Donnatol (as needed), Protonix, Celebrex, Cymbalta, Wellbutrin, Atenolol, Trazadone, Hyrdrocodone (as needed), B-12 injections, iron infusions.


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/12/2009 9:52 AM (GMT -7)   
I am glad people that are needing it are getting approved. Its funny how hard it is for really sick people, but I hear stories of ghetto trash using mental excuses with one try and very little evidence. Makes it hard for the people that really need it
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


lassadvocates
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/23/2009 1:25 PM (GMT -7)   
If you need help, please visit
 
 

(310)-744-4975
 
They can help you.
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