Introduction - Wife has suffered with Crohn's for 20 years now.

[caseymou]

My wife was diagnosed with UC at the age of 15, before we even met. When we were first married I was insensitive to the symptoms (I do regret those days). She was on pills to manage symptoms but always complained of painful bowel movements and fatigue. She's always been sensitive to drug treatments and has tried virtually all approved drugs to date. There were periods of remission in her early 20's but things steadily degraded, and got worse as we began having children. After the birth of our last, the drug choices were eventually exhausted and about 3 years ago we decided to move forward with surgical treatment.
The first major surgery was partial collectomy but there was many complications. Further signs of inflammation showed up almost instantly post op. Just about every complication that could happen, did happen including a strong addition to pain medicine and depression. Very rough time at our household, but I'm sure there are many others on this board with similar experiences or worse.
We decided earlier this year to have the remainder of large intestine removed earlier this year. Of course, this one didn't go perfectly smoothly either, and required several weeks of post op antibiotics via pic line at home because of infection and an abscess in pelvis. Once that was resolved and she weined off of pain medication (another unfortunate side effect of multiple surgery - pain med addiction) she's been a completely different person - in a good way. This is the woman I married. Happy, energetic (for crohns), and mostly healthy. Her last scope didn't show any active inflamation and she's currently not on any medicine for treatment. Her dr was realistic in saying that symptoms are likely to reappear at some time but to enjoy now. That is the short story of the 15 or so years I've known her, and the last 3 years of hell. Today is pretty good though, I can't remember a time when we were happier.
One question though, regarding employement. I should mention that she has worked for a small local government office for the last 15 years. They have been more than generous with allowances due to her condition. Paid and unpaid time off and even special accomodations post surgery. She did the whole 12 weeks FMLA thing, and then short term disability. Now that the dr's scope shows no active inflamation the short term ins people have denied further payment. I would never trade health for a paycheck, but I do believe that symptoms will come back, I just don't know when. We've filed for SSD and they are reviewing right now. Her employeer eventually let her go and filled the position this year so there is no job to go back to. What do we do financially now? Can we file for unemployement since she's in better health? I'm not sure how to avoid or disclose her condition with any potential employer. Will that affect the SSD determination? Can she just stay at home while the SSD does their thing and wait for an answer? If they deny because she's in better shape now can she reapply when/if symptoms reappear? So say in a year when/if more symptoms reappear we refile but they tell us she wasn't employed previous to the symptoms and deny claim again? On her best day life still isn't perfect, it was just that bad before so things seem really good now. Looking back, the job always took so much out of her that she would flop down when she got home due to exhaustion. I'd love for her to be able to spend what good time she has with the kids instead of sleeping (and all of the other related symptoms that come along with crohns).

 

[SarahBear]

Hi, welcome to the forum!

I'm sorry to hear you two have gone through so much. Great that she's feeling better now! Does her GI have plans to try another medication? What all has she tried? Has she considered any diets?

As for your questions about employment and SSD, I'm going to tag Crabby here for you. She'll be able to better answer your questions!

 

[Jennifer]

Hi caseymou and welcome to the forum!

Lots of questions to answer but first I have a question for you. Does your wife have Ulcerative Colitis (UC), Crohn's or both? I saw both mentioned in your post so it may help her case a bit more with SSDI or SSI.

- Yes you should be able to file for unemployment. There's no harm in trying and if denied always appeal.

- Filing for unemployment should not affect a decision for SSI or SSDI as they are completely separate. You can collect unemployment and SSDI/SSI at the same time.

- Yes she can wait for a response but keep in mind that an acceptance/denial letter can take up to 6 months and most people are denied their first time applying. If you aren't currently working with a lawyer I suggest getting one after your first denial letter to help you appeal otherwise you may have to deal with the appeals process for a very long time (could take over a year). In the meantime you or her will need more income.

Binder & Binder is often used for SSI/SSDI cases. I know Afidz is currently working with them if you had any questions for her.

- Generally you don't tell you're potential employer that you have a health problem. You tell them after you're hired.

- She can reapply for SSI/SSDI anytime whether she feels great or poorly. Main thing to keep in mind is to appeal any decision that says she's been denied. ALWAYS APPEAL.

If she hasn't applied for SSI yet, I'd start that process asap. Its completely separate from SSDI and you can get both at the same time. You can apply online here: http://www.ssa.gov/pgm/ssi.htm Always think of worst days possible when filing and never say that you feel fine sometimes.

Check out the Americans with Disabilities Act (ADA) as of 2008: http://www.crohnsforum.com/wiki/Disability-and-Crohns-USA IBD definitely qualifies as a disability and even if the UC was removed, I still think its very possible to be considered disabled due to having a stoma. If she has Crohn's as well then its a case of not knowing when it will pop up again and that still qualifies especially if she's taking any type of medications not to mention she will still need to actively see doctors and have regular testing done.

 

[afidz]

In all honesty, I am not sure I would choose Binder and Binder again. I don't know how good of a job they have done yet, as I have not won my case yet, so I can't judge them there. But I feel like because it is such a large practice that they aren't really taking the time to understand why I am filing. Getting a hold of someone to give or recieve updates can be challenging to because of the size of their practice. I have never actually spoken to my lawyer, its always the paralegals I talk to.
Like I said, I can't say much because I have not won or lost anything yet, thats just my opinion/experience so far. Good luck with your wife's case!

 

[Jennifer]

Only reason why I suggested them is because I assume they may be cheaper than getting your own lawyer yet maybe not. I know you said they take 25% of your winnings so caseymou, if you can find someone cheaper that you can actually talk to then by all means. I knew my lawyer personally and they let me make payments rather than just take one large amount because who knows, you may owe back rent or owe money for other things by the time you're wife wins her case.

 

[caseymou]

At 15 she was diagnosed with UC but since then the dr's haven't ever seen any inflammation in small bowel. As long as there is no evidence through scoping or blood work that flare isn't happening the GI dr is not going to use any maintainence type drugs. I'd asked multiple times about diet affecting her disease but the dr told us that since it's all in large bowel it didn't matter. I'm sure this isn't a complete list but from what I remember:
Asacol
Imuran
Remicade - had reaction to this on 2nd dose
Humira - was on this before 1st surgery, seemed to work for a year or so.
Cimzia
Methotrexate - used this with imuran between surgeries
Cyclosporine - IV while in hospital gave great initial results but when sent home it didn't work in pill form
prednisone - used for 6mo-1yr. Worked for flare once.
I think we were considering Tysabri but the risk really scared my wife, understandably so with her history of reactions and side effects.

To some degree, the other effects of crohn's are just as bad as the disease itself. She's been treated for depression, multiple hospital stays for c diff, fistula surgery, and has had her uterus ablation to try and help iron levels. She isn't able to tolerate any oral iron supplement, and has had IV infusion cycles to get it where it needs to be. I don't write this seeking sympathy, many here are in worse shape than my wife. We do pretty good all things considered though there have been rough patches.

SSDI isn't really an option, I make a decent salary and have insurance. Of course, with the loss of her salary and perpetual high cost of insurance (plus meeting out of pocket max every year-also have a daughter with epilipsy) things will definitely be more challenging without any income source from her. I was concerned that filing for unemployement is telling the government that she is able to work but cannot find it and how that will affect the SSD determination. She could probably work this week, but as all of you know next week and beyond is uncertain.
We began the process of filing for SSD while on std at the urging of an insurance case worker. Not sure if the case worker helped and I was overwhelmed at the depth and detail asked for at SSD meeting. Wasn't really prepared for that. So many trips to ER and hosptial stays I don't even know where to start organizing and documenting them. We tried our best and hopefully the SSA is able to see an accurate picture of what's going on. I've considered hiring an attorney but will wait a couple more weeks. My wife called SS and they are sending 40 pages of medical documents to their dr's for review next week. Supposed to hear something on Tuesday. Whew, i think that's all.

I fogot to mention - She had been feeling really crappy before last surgery. Basically bedridden for weeks with an unexplained fever. Of course white blood cell was up and scope said active inflammation. She went in and had the rest of large bowel removed and spent a week in hospital but wasn't getting better. The dr thought she had some septic poisioning because some waste was lost in stomach cavity while they removed bowel. So days of super antibiotics and white count/fever wasn't coming down. They did another CT scan and found a very large abscess in her pelvis that wasn't evident during earlier CT scans. Of course the dr said once she saw that, it was there in earlier CT scans but was outside the area they were looking at and wasn't as obvious. 2nd surgery to drain that abscess and put in drain tubes. Eventually, it shrunk up and she got a lot better. I know that abscess is common side effect of some of the medications.

 

[afidz]

as far as I know, I might be wrong but being on unemployment doesn't not affect SSD determination. I am collecting unemployment, and they are aware of it, it has not seemed to be an issue so far. In my first denial letter it was not listed as a reason why I got denied. There is no harm in hiring a lawyer now, they only get paid if you win and it would be the same amount of money as it would be if you waited. they take a percentage of what the back check is. The goverment only allows up to 6k if that helps at all.

 

[Jennifer]

Caseymou can you clarify some things for me? What do these abbreviations stand for?

SSD
STD (I don't think you mean Sexually Transmitted Disease)
SSA
I'm assuming SS is Social Security.

When I say SSI that stands for Supplemental Security Income. SSDI stands for Social Security Disability Insurance.

I feel like sometimes we're talking about the same thing and other times completely different things.

Also was she ever diagnosed with Crohn's disease? Ulcerative Colitis (UC) is completely different from Crohn's disease. I'm just trying to understand.