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Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 4/9/2008 9:15 PM (GMT -7)   
Hey Guys:

I had a question and would GREATLY appreciate any feedback @ all that anyone one of you can give me!

I am 27 years old and very very ill with my Crohn's. It has actually came to the point where I have to file for Disability. With the amazing bills coming in from regular doctors, the mayo clinic, medications, etc. (as I am sure some of you can relate) and being so ill, it is time for me to move on. What a hard step this is. I am young, I do all I can and take care of myself and I can barely walk. I have amazing doctors though so that is great!

So I would LOVE some advice from anyone who is near my age and is on Disability for Crohn's OR someone who is familiar with it @ all and can be of any help. I am just now in the process of applying! Bit Step and a Ton of Work! But I really need some help as I can't keep a job even though I have had some fabulous jobs:)

Again, Thank You so much in advance for offering me any help you can give me!

Take Care and Be Well!
I have had Crohn's since I was 21 years old and I am now 27....


New Member

Date Joined Oct 2004
Total Posts : 12
   Posted 4/9/2008 9:37 PM (GMT -7)   
The one thing that I can suggest with SSDI, do NOT give up. With them, it is SOP to deny the first time that you apply for disability. But don't give up. Keep applying until they give it to you. Also, if you don't give up, once they do give you SSDI, they have to pay you back to the date of the original application.

Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 4/9/2008 9:51 PM (GMT -7)   
Oh Thank you sooooooooooo much!
So great to hear that and Thanks so much for helping me out!
Like I mentioned, anything will help me @ this point.
And I won't give up!
Take Care,
I have had Crohn's since I was 21 years old and I am now 27....


Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 4/10/2008 5:01 AM (GMT -7)   
Hello Lovepink,

Many States have an assortment of programs to help the disabiled. I suggest you call your State's Dept. of Social Services (or whatever it is called where you are) and see what they offer. Local churches also typically provide help with getting to appointments, shopping, etc. You may want to call some of them. Hang in there! I see you are on Humira -- is it working at all for you??

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 4/10/2008 5:55 AM (GMT -7)   
I suggest you get some help with it. I applied and was denied. I knew I couldn't work outside the home. The disease is too unpredictable. But, it forced me to create a business for myself at home, which I love and am doing well at. When I'm sick my family helps. I too have been told that you don't give up, expect to be denied the first time and resubmit. Gather all your documents and information, it's alot of work but something you need to do for yourself! Is there a patient advocate at the clinic that you go to? If so, they might be able to help or suggest someone who will help you with this. You might call the Health Department and see if they know of a local agency that could help you. Best of luck to you. I too would llike to know how your doing on Humira? I just started less than a week ago. Take care of yourself and keep us posted!

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 4/10/2008 8:52 AM (GMT -7)   
I got SSDI on my first try. My age had a lot to do with that, 55 at the time,, but if you are truely determined and have the support of your doctors you should have no real trouble. Your main concern may be your age. They tend to think younger people can be retrained for another type work and in fact maybe you can. If not there are lawyers that do nothing but file for people like you. The charge is usually a portion of what back payment you receive from the time you apply until you are excepted. I had the advantage of being an old geezer. Good luck to you and hope you feel better too...
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.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/10/2008 9:42 AM (GMT -7)   
I think you could at least get disability temporarily until you could get this current flare under control, but for life I think it is going to be a little difficult. I agree with Sniper here, that your age is going to be troublesome. I have thought recently that its getting closer to that time for me to think about disability, and I have a mild case of Crohns. But the extraintestinal things related to Crohns are really wearing me down. And I am 50. But I think even I would have a difficult time getting disability. I miss alot work every year for Crohns related problems, but still think it would be difficult for me to get approved.

I think at this point since you are having such a difficult time, you should try to apply. I think when we are so sick we really aren't being as useful to any one going into work. Really how much do we accomplish? One suggestion I will give is this, GET A LAWYER. Many are usually denied the first time, but have heard that many more have success when they use a atty. I hope you get some help and some relief. Feel better!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 4/10/2008 10:28 AM (GMT -7)   
Thank you all for your replies! I really appreciate ALL Of your time you are taking to help me out. Really anything helps. I thought that I would answer some questions that some of you had for me, Thanks!

Oh and I wanted to mention when I say I can't walk I mean I feel I can't walk but I make myself and I live with it and am fine! I have people around me 24/7, an amazing family and fiance so I am way better taken care of then I ever imagined. I do great for feeling so awful. I have had 5 Fabulous jobs but have had to leave them due to being in the hospital. I have been hospitalized 6 times since October and then about an average of 3 times since. I have a very rare and severe case of Crohn's. And in October I was diagnosed with a severe blood clot to the lung- now that was scary and I have not been able to recover since, it has been awful. At that same time I had to have some blood transfusions and am very close to doing that again as well. I have lost a dangerous amount of blood and my Doctors are all very aware. I have a great group of Doctors which I really think helps. I won't go in to it all. But at this point, I cannot work, I am very sick. Between the severe pain, blood loss, exhaustion from the blood loss and severe anemia, head aches, nausea and passing out like feeling, etc (all related to the Crohn's) I just can't do it. And then on the amount of blood thinners I am on (unfortunately) I need to be even extra careful. Blood Thinners are not helping my blood either.

My parents are amazing and so is my Fiance (and my many friends), they amaze me everyday. I have not worked since October but financially they have taken care of me and I just can't believe it. Of course I hate it but I am so lucky (if that makes sense). But it is getting out of control. I just got back from the MAYO CLINIC and you could imagine that bill and my insurance doesn't cover the Mayo Clinic and the MAYO denied financial help for me even though I am making $0.

I have a ton of help and support with this disability Paperwork so that is great and I am working hard on it. I will think about the Lawyer thing. I have amazing records, pictures, doctors, support etc. Which I think will help. But of course then their is my age- Yuck! It is really too bad. But I will keep all of you posted!

HUMIRA: So I have been on Humira about a year or a little more. I was on Humira until October 2007 when I got my blood clot. I was actually diagnosed with Pneumonia (supposedly) for 6 weeks before they actually found the blood clot (Yuck). They took me OFF of the Humira because they thought I had a really bad case of Pneumomia and knew that the Humira would make everything worse! Well after being so sick and being on 5 rounds of antibiotics and being told this is Pneumonia, I said no it isn't and forget this. So I drove myself to the HOSPITAL and said something is wrong, here are my symptoms and this is not Pneumonia (LITERALLY) and within 30 mins I was on the heart floor in the Hosp. with a severe blood clot. Just a crazy story! So after missing about 2-3 doses of Humira and them making sure it was this blood clot (which is BAD but not for Humira), they put me back on it! And it hasn't worked since. Quite interesting actually. It is very frustrating for me and sad. This is the last medication for me as I have tried every single medication for Crohn's that there is. So in otherwards BEFORE my blood clot the Humira WAS helping and I was about 70% better out of 100% then I was without it. Does that make sense?

So I think the Humira did work for a short period. NO major side-effects but of course the shot doesn't feel good. But then pen is a lot worse then the syringe. I get bad muscle pains after but they go away quickly.

I would love to hear how everyone else is doing on HUMIRA!

And of course anymore support with disability would be Fabulous! Geez, sorry this was so long!

I have had Crohn's since I was 21 years old and I am now 27....


New Member

Date Joined Apr 2008
Total Posts : 19
   Posted 4/21/2008 3:53 PM (GMT -7)   

Sorry to hear you've had such a go of it, my best wishes to you...

First, I'm 29 and was Dx'd about a year ago, but I'd been sitting on the issue for years. (Yes, double entendre intended).

As I feared, my crohn's is cost me my military career after nine years in the Air Force and disability has now become a HUGE issue for various reasons. Now I haven't had to deal with the SSA but I thought you should know that military regulations spell out exactly what severity of symptoms correlate to what percentage of disability. Again, this is not the SSA, but you can go to them and say that the Federal Government already has standards in place. (It makes it a lot easier dealing with bureaucrats when you can show them how they can follow someone else's lead...) In any case, the AF rated me at 30 percent disabled and I'm waiting on the official Veterans Administration rating - which will be higher as the AF can only rate the Crohns while the VA must also take into account the AS and RA and other dings and nicks I picked up in my time in.

They reached 30 percent by looking at the number of flare-ups/missed work I have in a year. In my case, it's about 3-5 times a year although I experience external drainage pretty much continually. No light colored pants in my closet...

I don't recall the specific AF regulation that covers characterization of each disability rating, but your lawyer or doctor should easily be able to find the right folks if they contact your nearest base public affairs office or patient advocate's office (those are AF terms, not sure what the other services might call those offices). If you have any current or former military types in your family, you might ask them to contact the American Legion or Disabled American Veterans, both can help in trying to find this sort of info.

Speaking as the son of an attorney, I HIGHLY recommend you get one. More than once, I've seen problems resolve themselves astonishingly fast for no other reason than having a lawyer. It shows you mean business. No one else has your interests at heart like you do - well, maybe except for your lawyer right after you've paid up.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 4/21/2008 4:28 PM (GMT -7)   
I am 29, and I filed when I was 27 and it took 2 and 1/2 years to get disablity.

Pancoaifo, do you know where those are posted? I know they are somewhere but for the life of me I cannot find them.
Forum Co-moderator
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....
All suggestions/options/opinions are caveated with please consult with your local health care provider...

New Member

Date Joined Apr 2008
Total Posts : 19
   Posted 4/21/2008 5:10 PM (GMT -7)   
I was medically retired last October and the VA is fast-tracking my package through (because they lost it the first time). I'm already getting full medical treatment for the Crohn's through the VA - because they retired me for that specific condition, you may not be eligible depending on the nature of your separation and time elapsed.

I'd have to dig through my records to find the specific language on the frequency of attacks equaling this or that level of disability. Not sure where it ran off to...

Keep in mind, even if someone is DX'd after leaving service, there is a presumptive service-connection period of one or two years where they (the gov) have to assume anything found may be related to military service. (And thus, you can file a comp claim with the VA)

The best source I can find off hand is Air Force Instruction 36-3212

1.7. Disability Ratings. The PEB assigns a percentage rating to a medical defect or condition when the member is physically unfit for duty. By law, (10 U.S.C., chapter 61), the Air Force assigns ratings from the Department of Veterans' Affairs (VAs') Schedule for Rating Disabilities (VASRD) and implementation guidance contained in DoDI 1332.39.


A2.21. How the Air Force Applies the VASRD. The Air Force uses the VASRD and appropriate DoD
guidance to determine the percentage of disability for each ratable defect or condition shown on AF Form 356. The VASRD does not provide a specific rating for all physical defects or conditions. Many of the general policies in the VASRD do not apply to the military services, since they are primarily for the guidance of VA rating boards and often cover laws and policies that apply only to the VA. Consequently, DoD has developed specific guidance on general policy and certain ratable defects and conditions listed by VA diagnostic code numbers (DoD Instruction 1332.39).

Scott Mumble-Mumble, SSgt, USAF (med ret)
DX April 2007, Suffered symptoms for many years longer
Taking Asacol (2400mg), 6MP (75mg), Flagyl (750mg), Cipro (1000mg), Relafen (1000mg) daily. about to restart Remicade or Humira depending whether or not I've developed antibodies to Remi.

Money isn't the root of all evil, Prednisone is the root of all evil...

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 4/21/2008 7:41 PM (GMT -7)   
Love Pink - you sound like a good candidate for tsybari considering everything else has failed. Have your doctor's considered it? I don't know if you could take it with blood clots, etc.
26 Year old married female law student.  Diagnosed w/ CD 3 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 alos take a birth control pill to allow some fun in my life.

New Member

Date Joined Apr 2008
Total Posts : 4
   Posted 4/21/2008 8:03 PM (GMT -7)   

HI, I just saw your post on trying to get disability. I have the name of a WONDERFUL lawyer if you are interested. He got my disability very quickly. We never ahd to go to court or appeal. It was approved the first time around. that doesn't happen very often.

  I will tell you something he told me and that is to keep your answers to the disability questionaire short and to the point. He said that they look at it like if you can take the time to fill out the forms with lengthy, detailed answers then you are able to do some kind of work. Good luck. Let me know if you want the attorneys name and phone #. He's from Illinoise but that's not a problem. I'm in Alabama and he took me as a client.


Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 4/21/2008 8:42 PM (GMT -7)   
Can anyone please help me in telling me how I can respond to all of these wonderful people (ABOVE) who have done all they can to help me? Or do I just post like I am right now? I would really appreciate it if anyone can help me out! Then I can reply to everything!
Thanks so much,
I have had Crohn's since I was 21 years old and I am now 27....


New Member

Date Joined Apr 2008
Total Posts : 4
   Posted 4/29/2008 11:08 AM (GMT -7)   
I know how you feel. I am only 25 was diagnosed when I was 22 for the 1st year I was in and out of work EXTREMLY sick. Then after having no choice I had to file for Long Term Disability (LTD) I was approved. I am still not in remission I have been on Prednisone, Remicade and now am trying Humaria (just started that 2 weeks ago). I want to get into remission, I have not been in remission at all scince being diagnosed. I am hoping this will do the trick, I dont want to have surgery. But I know what its like not being able to be reliable for a company, its not that you dont want to and since physically you look okay, people dont see the inside of you, they just dont understand. I wish you the best and I hope you can get feeling better. My symptoms are I am usually always fevered, lack of sleep and energy, throwing up, always in the bathroom and extremly anemic. I feel your pain, not to mention I have a 4 year old daughter, which is hard to be a good mom and never feeling well.
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