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Posted 11/1/2011 8:21 PM (GMT 0)
Isn't there anything available for us in Canada and the US?

Disability is out of the question for most, particularly in Canada. It's either extraordinarily hard to obtain disability status, or they'd make you use your life savings. So what is out there?
Posted 11/1/2011 9:58 PM (GMT 0)
I had just started my first job out of college when I was diagnosed. I ended up in the hospital and got C Diff, which made things even worse. I am now on unpaid sick leave and have applied for short term disability. I technically lost my position at work, but they may end up relocating me to a different position. I feel like a failure, even though I know it's not my fault. I just worry that I'll get sick again and again, and then no one will want me to work for them. Definitely not how I thought I'd be starting out in the workforce...
Posted 11/2/2011 6:35 AM (GMT 0)

beatUC said...

Many corporations have LTD (long term disability) which pays you as long as you still have UC (remission or not) are still being treated by a doctor. I think looking into these plans and maintaining medical insurance is crucial for us all.

I would be surprised if an early payout pension is available to other UC'rs. First there are few pension outside the government arena these days and it is hard to show that it is totally debilitating as UC typically flares and goes away. Your case is surprising as the hospitalization is usually a temporary 1-2 weeks stay. But I am referring to the US perhaps your in the UK or AU.

LTD/STD usually will not pay the first year for any issue if you were on any medication for that issue in the 6 months prior to enrollment. If your an independent consultant forget even being offered the chance to signup. I switched to employee to get this but am still getting all of my overtime paid thru year end.
Posted 11/2/2011 10:37 AM (GMT 0)

I don't work at the moment but that has more to do with my stroke that caused my paralysis.

If I ever recover from the paralysis I will definitely try to work again.  Not looking good so far though.  Almost two years now and I still can't open my left hand.  My left arm is useless and my left leg is about as functional as a walking cane.

Due to my paralysis it was easy for me to get on disability but I still had to be disabled for 5 months before they would start paying my benefits. 

This is why I wanted to post, I thought this might help someone.  I have to be disabled for two years before I could qualify for Medicare health insurance.  I needed insurance badly or I would go broke very fast.  My dad stumbled across this insurance in a AARP newsletter and showed it to me.  It's called PCIP or Pre-existing Condition Insurance Plan, administered by GEHA.

To qualify for this insurance I had to have been without insurance for 6 months and I also had to have a denial letter from an insurance company.  The denial letter was easy to come by, Blue Cross Blue Shield of Alabama denied me instantly lol.  Ulcerative Colitis and stroke, a no-brainer for them.

I pay $221 a month for PCIP and had to meet a $1000 dollar deductible for in-network providers and a $1500 for out-of-network providers.  The only reason I had to pay the out-of-network deductible is because I didn't realize the hospital accepted my insurance and the hospitalists(doctors) didn't.  The monthly premium depends on which plan you choose and what age group you fall into, I'm 33.

The last time I was in the hospital my bill was over 13K but the "allowable" was a little over 9K so I only had to pay 20% of that.  I ended up paying over $1900 to the hospital(not including the hospitalists), which is better than the full amount.  Since the hospitalists were out-of-network, I owed them 40% of the allowable amount.

If I remember correctly, I had to meet a $150 deductible for prescriptions and after that my Asacol was only $30 each refill(180 pills a bottle).

Right before I got this insurance I had to pay a $5K hospital bill so this insurance has saved me several thousand dollars so far.

I don't think this insurance is available in every state but it was avaible in Alabama so there is a good chance its available in yours.

I hope this helps someone.

Posted 11/2/2011 1:15 PM (GMT 0)

aguywithuc said...

I would be surprised if an early payout pension is available to other UC'rs. First there are few pension outside the government arena these days and it is hard to show that it is totally debilitating as UC typically flares and goes away. Your case is surprising as the hospitalization is usually a temporary 1-2 weeks stay.
end.

There are insurances such as Aflac that cover long term illness after you exhaust the short term plan you may have. I never said most people will get early pensions, I was very fortunate to be offered that and my case was unusual in many ways.
As far as hospitalization, it is usually the point that we UCers get to that pushes us to the serious side of things where working is not possible. In my case I needed transfusions, pic line, etc, it was VERY serious and I stayed for more than a month.
Under most LTD plans. as long as you first establish that it's not possible to work, the plan must pay you as long as you are still being treated my a doctor and taking meds, remission or not.
LTD is something you have to pay for over and above your employers' benefits, but it's usually cheap, and offered by most employers, but you have to opt-in like life insurance..
There is also, workman's comp, short term disability and many other plans depending on which state you live in.
As UCers it's up to us to check into our benefit plans and protect our families against financial ruin.
Posted 11/2/2011 3:54 PM (GMT 0)
jbitBama: I am sorry for all you have been through. How scary! I hope you heal and you're able to use your hand again soon. Did you know that having UC puts us at increased risk for strokes? Were you on any medications that could have caused this to happen? This is exactly why I stopped taking birth control pills with estrogen.
Posted 11/2/2011 9:23 PM (GMT 0)

beatUC said...

aguywithuc said...

I would be surprised if an early payout pension is available to other UC'rs. First there are few pension outside the government arena these days and it is hard to show that it is totally debilitating as UC typically flares and goes away. Your case is surprising as the hospitalization is usually a temporary 1-2 weeks stay.
end.

There are insurances such as Aflac that cover long term illness after you exhaust the short term plan you may have. I never said most people will get early pensions, I was very fortunate to be offered that and my case was unusual in many ways.
As far as hospitalization, it is usually the point that we UCers get to that pushes us to the serious side of things where working is not possible. In my case I needed transfusions, pic line, etc, it was VERY serious and I stayed for more than a month.
Under most LTD plans. as long as you first establish that it's not possible to work, the plan must pay you as long as you are still being treated my a doctor and taking meds, remission or not.
LTD is something you have to pay for over and above your employers' benefits, but it's usually cheap, and offered by most employers, but you have to opt-in like life insurance..
There is also, workman's comp, short term disability and many other plans depending on which state you live in.
As UCers it's up to us to check into our benefit plans and protect our families against financial ruin.

I did not say most either, my point is I doubt *any* will get your deal since most companies offer 401k instead of pensions these days. LTD was part of the bundle when I converted to employee, I could not opt in for greater coverage. LTD from consulting agencies simply did not work because my assignments are typically over after a year so just as I would be clearing the 1 year requirement in the program I would be starting over usually with another firm. The pressure to convert along with the LTD option given my previous thrombosis from UC was motivation to cave in and go employee. Mega hours is not friendly to UC due to lack of sleep, for instance bedtime has been 4:00 am all week. So I asked to switch back but when they agreed to cover the extra effort until project conclusion I accepted and LTD gives me peace of mind. When I came to in the ICU last year and my right arm would not work from the thrombosis - I was really miserable I did not have LTD.

LTD/STD (IN) 28.70 28.70

Glad you brought this up and to the forefront of my to do list. I just checked the paper work and all is good. Must have been the extra life insurance paperwork I never filled out due to being too busy. That so ok I got the kid covered with a big individual policy from pre-UC days.
Posted 11/3/2011 12:22 AM (GMT 0)
I worked up until the day I passed out with a rbc of 6.4. To this day I do not know how I did it-along with 2 kids- but I was in severe denial.  I do feel bad for all the young people whom not only have to work but have a family. I hope my son now is not going to have a hard life especially with his carrer choice of becoming a doctor. Stress is really a killer for UC.
Posted 11/3/2011 12:44 AM (GMT 0)

notsosicklygirl said...
jbitBama: I am sorry for all you have been through. How scary! I hope you heal and you're able to use your hand again soon. Did you know that having UC puts us at increased risk for strokes? Were you on any medications that could have caused this to happen? This is exactly why I stopped taking birth control pills with estrogen.

Hey thanks!  At the time, strokes weren't even on my radar; so I had no idea that my severe headaches were anything serious.


 

I was only taking Asacol at the time and was in the middle of a bad flare-up when I developed severe headaches.

My stroke was actually caused by a brain bleed which led to a hematoma which led to loss of oxygen to the right side of my brain.  The doctors were actually asking me if I had fallen and hit my head or if I was using drugs.  Doctors do not know what caused the bleed.  I had to have a craniotomy so they could remove the hematoma.

I'm a guy so I don't have to worry about the birth control pills.

Posted 11/3/2011 2:43 AM (GMT 0)

jbitBama said...
I don't work at the moment but that has more to do with my stroke that caused my paralysis.

The last time I was in the hospital my bill was over 13K but the "allowable" was a little over 9K so I only had to pay 20% of that. I ended up paying over $1900 to the hospital(not including the hospitalists), which is better than the full amount. Since the hospitalists were out-of-network, I owed them 40% of the allowable amount.

When I had mine I got burned - 64,000 bucks but my end was closer to 10k after the discount. Very expensive being in the ICU. Another 8k for 2 hour MRI/MRV of the brain with vascular layer. Sorry your paralysis was permanent, I feared mine was but it went away and I got off coumadin early and use curcumin every day instead. They had me starting the therapy in the hospital and said I was wobbly and were lining up appointments and telling me to not take any supps. I took Panax Ginseng because studies showed it helped. Stroke board people said I was 'crazy' and risking my life but it worked out well.

Hopefully the only thing I forgot is my limitations. My memory seems better than before, until I get exhausted that is. However the odds are that I have a great chance of having a second now that I had my first so living my days as best as I can while I can. Taking doctors advice and hydrating all day too.

"Thrombosis is a well-recognised complication of inflammatory bowel disease (IBD) and is an important cause of morbidity and mortality. The commonest are deep vein thrombosis and pulmonary emboli . Arterial thrombosis, in particular stroke, is rare in IBD. No guidelines are available at present to help manage this severe complication. The authors describe two cases of stroke in patients with ulcerative colitis (UC)."

Mine was Sagital Sinus Thrombosis and I drove myself to the emergency room after waiting 24 hours. I read about a young man that waited 36 or 72 hour and they could not save him....
Posted 11/3/2011 4:45 AM (GMT 0)

aguywithuc said...
When I had mine I got burned - 64,000 bucks but my end was closer to 10k after the discount. Very expensive being in the ICU. Another 8k for 2 hour MRI/MRV of the brain with vascular layer.

My last hospital stay was for a flare-up and fortunately wasn't for the situation involving the stroke. I too was burned for over $70K in medical bills. I was in the ICU for about a week and a half and was only in the hospital for a month, total. I had just sold my house and received over $35K back from that and of course the hospital and doctors took every penny of that and called it even, lol.

This turned out to be a good thing in the end because it rendered me completely broke and qualified me for medicaid insurance. Medicaid actually sucks and people will look down on you for having it. Very few doctors will take this insurance. I lucked-out and it was accepted by the hospital and by all the doctors. Which means I could take advantage of retroactive medicaid. So medicaid went back and paid all my medical bills and the hospital and doctors had to refund all of my $35K. Thought this was worth mentioning incase someone was in a similar situation.

aguywithuc said...
Hopefully the only thing I forgot is my limitations. My memory seems better than before, until I get exhausted that is. However the odds are that I have a great chance of having a second now that I had my first so living my days as best as I can while I can.

After my stroke, I had a hard time answering questions.  I would just kind of space out when asked a question.  For some reason I just couldn't answer a simple question.  My memory is fine, I think.  Things I did yesterday seem like they happened a week ago and things I did a week ago seem like they happened months ago.

My neurosurgeon said it was very unlikely that my brain would bleed again but they have no idea what caused the bleed in the first place.  The last theory he gave was that a blood clot exploded onto my brain .

aguywithuc said...
Thrombosis is a well-recognised complication of inflammatory bowel disease (IBD) and is an important cause of morbidity and mortality. The commonest are deep vein thrombosis and pulmonary emboli .

I didn't realize this until I started reading these forums. Is it true that prednisone can cause blood clots too?

Posted 11/3/2011 5:14 PM (GMT 0)

jbitBama said...
After my stroke, I had a hard time answering questions.

I absolutely know what your talking about. I have been paying extreme alimony since 2006 by taking consulting gigs for high end massive database work on unix platforms. The money rolled in so fast while working one gig I just up and quit and took the summer off while paying that extreme alimony. Well after the sagi sinus thrombi the headache was so SEVERE and I was doped up on vicodin. I had all kinds of friends pitch me for jobs left and right. Normally I would go in an do fantastic and the gang interviews / technical drilling. This time it was different, I would see things or hear things that were definitely familiar however I could not recall the details nor the meaning and was bombing opportunity after opportunity. Quite honestly I have been so much happier to have my old life back then when I had it before this thrombi. I refused to take a pain med that people claimed wiped out their recall. I realized that vicodin totally resolved UC but that it too was effecting recall. Anyway after one month I was back on a contract because they had done the techout 6 months earlier but I did not want to work there. Now I was thrilled for a shot to work the interview was just chatting with managers since the team had already evaluated me in the spring. Felt REALLY lucky there. Now I am at a startup downtown in a very highly visible position and no way could I have pulled this off last year after getting out.

The neurologist and my GP said it was due to high dose 100mg-60mg PREDNISONE and DEHYDRATION. I wont take PRED again and I keep hydrating throughout the day.
Posted 11/4/2011 1:18 PM (GMT 0)
When I had UC, I was missing an average of 1 - 2 days a week at school (one teacher thought I was 'wagging' her class as I regularly missed it due to doctor's appointments - she never thought to enquire as to why I was never there).

However, since surgery, I've regularly managed 40 - 45 hour a week jobs without a problem. I currently work as Practice Manager at a Hearing Clinic where we do hearing assessments, hearing aids, Cochlear implants and other hearing implant surgeries.
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