Thinking about going on disability

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JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 2/25/2018 10:43 PM (GMT -6)   
I have never thought I would get to this point. I am not even 30 yet, but I feel like my body is just falling apart.

Over the past two-three years, I have been trying to manage working a full time job, in addition to taking care of my wife and 2 year old daughter. In the meantime, my Crohn's has barely been calm. The last medicine I was on, Stelara, has failed me ultimately after a year of being on it and it providing only a bit of relief.

I had just started a new job a month ago, after leaving the last one due to some major mental stress I had there. The new job is pretty taxing when you talk about constant activity. I was amped up for it due to the great management there, but my Crohn's has since spiraled out of control. I am currently in the hospital getting IV steroids, trying to tolerate food again (which has been painful, at least not nauseating anymore), and starting Remicade again after trying it a few years ago (and failing at it, again). I am out of medicines if Remicade doesn't work again.

Now, I am seriously thinking about going on disability. This is something I would have never considered in my past, but I cannot tell you how much I have been struggling these last few years. I used to be able to push through... but mentally and physically I have been so much more tired than I ever have been in my entire life. My health is now faltering with barely any options outside of some studies that are at least an hour away from me. Praying that Remicade will somehow work again. My wife is thinking this may be the only way for me to recover my health the way I need to.

Anyone have experience in this realm recently? Or experienced anything in regard to disability? I have had this disease for 20 years... have always pushed... but I feel like I can't push much more.

If anyone can weigh in on this, it would be of great help. Thank you.

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 313
   Posted 2/26/2018 2:25 AM (GMT -6)   
Have you ever had surgery? And where is your Crohn’s at in the body? I am sorry you are going through this, this disease really is debilitating at times. Sorry I cannot answer your disability question- I had to quit my job with my last flare though. Couldn’t get it under control, and no meds were working. I understand the whole pushing part- it’s hard to put in work when your body is destroying itself.
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin

Stevo68
Regular Member


Date Joined Jun 2011
Total Posts : 84
   Posted 2/26/2018 6:32 AM (GMT -6)   
I just turned 50 and I've thought about it recently, although not enough to look into it to see what the actual benefits (meaning money) would be. I still have 2 in college and plan to have a wonderful retirement, all of which would be gone if I did so. I just recently went on Remicade (3rd infusion last week) and was feeling much, much, better until I had an attack this week. Seton drainage everywhere. Butt pain. It's just awful. Have you been at the job long enough to take FMLA? I'm thinking about doing that and trying to check myself into a clinic or something.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10559
   Posted 2/26/2018 7:19 AM (GMT -6)   
I was wondering about surgery too. But if surgery is not an option then do please very seriously consider going on disability: you need the help. Severe Crohn's which doesn't respond to meds can be genuinely disabling and have far greater reaching effects than just making us need to go to the bathroom a lot.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16773
   Posted 2/26/2018 8:35 AM (GMT -6)   
Jake, SSD can be difficult to get approved. I suggest you check out SSA.gov & read about disability requirements. Your dr needs to be behind you 500%. Does your employer offer short term or long term disability? I have heard some states offer a type of disability this could be something to check out. I do not think many states offer it because I have seen so many people have to wait 2 years or longer trying to get SSD approved.

Check out all of your options. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/26/2018 9:22 AM (GMT -6)   
Disability has been in my mind for a long term and I have been preparing for this eventual outcome for some time. After I was diagnosed of Crohn's, I was very sick and out of work for 2 years living with my parents. My parents paid everything for me including food and medicine. I had a good resting period during those 2 years. That was long time ago, since then I have been working for many years.

Long term disability means how you are going to make a living without stable income. Can you live with just your wife's income alone? There are two types of long term disability insurance: (1) Private long term disability and (2) Social Security Disability.

(1) Check with your HR department, because many private long term disability policies have a "waiting period" (or elimination period). You have to be on the job for a number of months before you are eligible for private long term disability. (2) Social security disability usually pays less than a private long term disability policy. To see if you are eligible for Social Security disability, you can go to their website to see if you have earned enough "credits" and how much would be the monthly benefit. The longer you work and the higher your salary, the higher the monthly benefits.

I do not know which country you live in. I know some European countries have much better disability benefit and social welfare system than the States.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 2/27/2018 12:18 AM (GMT -6)   
Hi All,

I know a few of you mentioned surgery. I already had two surgeries for my small bowel... in 2007 and 2014. I have about half my intestines left.

Sadly, the new job is just a month old, so FMLA and even LTD is out of the question. I am pretty much stuck without a paddle here. The new job is really a job that requires me to be there often, and be in the middle of the action. It is something I don't mind doing when normal, but it is really hard when I am out... because then things aren't running smoothly. I may get flexibility from them as they have been awesome, but I don't think I can physically do the job at that high of a caliber that they need. I used to, but this hospitalization is an example of why I can't anymore.

I potentially may be able to go back to my old employer in some shape or form. They have been super supportive, even with my health issues. I had some issues with one of the managers there, but I think my absence had amplified that I was really doing too much there when I was there last. I don't think disability long term would be something I could do, but my body is so tired. I have not been able to be the father I should, because I am just too tired to play with my daughter. Having my body constantly running at 80+ bpm is nuts and just tiring (and I think it is due to my body trying to cope with my disease). This hospitalization is the first time I have seen my BPM back in the 60s again, in over a year.
25 year old with Crohn's since 1998
Medicines: Tysabri, omeprazole for acid reflux
Supplements: vitamin D, zinc, b12, multivitamin

Mak37
Regular Member


Date Joined Jan 2018
Total Posts : 313
   Posted 2/27/2018 4:15 AM (GMT -6)   
I would try and go on disablitly at least until you can find a job that works for you.. maybe one where you could work from home on days you don’t feel like going in? You’ve been through all your options including surgery so they should understand why you need time to try and figure something out. Especially since you can’t get FMLA or anything.
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/27/2018 9:33 AM (GMT -6)   
If you logon to www.ssa.gov and create your own account, you can see it is not much payment every month even if it is approved. But you might qualify for Medicare if you cannot get on your wife's health insurance plan. Having a young child at home can be hard, something I can sympathize. If you go back to your old employer, can you become immediately qualified under their LTD insurance? Sometime, parents or in-laws can help especially if you have a young child at home. What is BPM?

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 2/27/2018 10:03 AM (GMT -6)   
I actually had a SSA login from a while back. Just checked, and I would be eligible for $1,500 a month.

I am still sniffing things out, but it seems as if the previous job is willing to give me in flexibility. I guess they realized the amount of work I did and what I know is really valuable. It is something I am heavily thinking about.

They didn't have LTD at the previous employer, but because I never did quit (been helping them very part time), I am still eligible for their family leave policy in case I do get really sick. I have STD for up to 6 months through AFLAC, so technically am covered some way or another at this point. I get health insurance through my wife's work, so that other stuff is a moot point (thank God).

When I was talking about BPM, I am talking about my heart rate. I haven't had a normal heart rate in a couple years. That seems to tell me that my body just isn't working properly. The fact that stressful situations always puts me above 100 beats per minute scares me as that shouldn't be a normal thing.
29 year old with Crohn's since 1998
Medicines: Remicade (restarting 2/2018), Methotrexate
Supplements: vitamin D, zinc, b12, multivitamin

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/27/2018 10:44 AM (GMT -6)   
You might want to talk to your primary doctor to see what's going on with your heart (or blood pressure) to rule out other medical conditions besides Crohn's. You can use SSA as a last resort. Running low on finance and being sick at the same time is no good. But it's good to know you have your wife's backing. I heard that hiring a lawyer can sometimes help with a SSA denial especially you have had so many surgeries. But again, that's a last resort.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 2/27/2018 8:28 PM (GMT -6)   
The heart stuff is old news. They have tried to do certain things to help with my heart rate, without any resolve through my primary doc. Much of what has affected it is dehydration due to my disease (drops from 100+ to around 80 many times when I get my weekly fluid infusion). I am a very type A, tense person. Things stress me out, so that doesn't help. My disease right now has taken a lot out of me...so I am pretty certain this is an indirect thing due to my Crohn's. I didn't realize it was as bad as it was until I got admitted, and it has taken about 5 days of IV steroids to calm it down to reasonable numbers. It was so bad that prednisone couldn't even absorb. The conversation is that my IBD doc wants me to do a bone marrow transplant to reset my immune system, and I will be discussing that next week with a Cancer doctor.

Much of what I am going to do is trusting that things will be alright, and taking the giant leap to improve my health by leaving the work world for a temporary period. I have realized that I have put my job above my health, which has caused major issues for me. I am working towards getting things back in order again. It just needs to happen, and my wife thank God is on my side.

annod123
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/2/2018 5:23 AM (GMT -6)   
I have had this disease (crohn's disease) since 1987. It has taken its toll on me as well. As far as the energy level, I offer this advice. I do not work for this products company but I highly highly recommend taking "proteinex 18". I have an ileostomy because of the crohn's disease and I do not absorb proteins and other nutrients well and was really drained. Those with crohn's with or without an ileostomy should try this. Proteinex 18 has 18 grams of predigested protein per serving (2 tablespoons) for easy fast absorbtion. I take 2-3 servings of this daily and it has made a world of difference. I am an emergency room nurse and it has done wonders for me, however be fore warned: it tastes nasty and takes a lot of getting used to. Grape tastes the best, if you could say one tastes better. The point is it works. My hair, nails and skin are a 100% better, my energy level has increased 10 fold and I do not feel as run down. I can run the emergency room for 12 hour shifts once more. Good Luck and good health to you!!!!

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 3/2/2018 11:30 AM (GMT -6)   
My protein levels are actually fairly normal, which I know proteinex is mainly a supplement for. I just got word this morning that my iron levels are fairly low, so I am going to need to get iron infusions shortly to help boost the levels.

I have learned for my own disease, much of my body's deficiencies can be combated by keeping certain levels at bay. Potassium is one that I get low in quite frequently, and effects my ability to concentrate. Thus I get weekly infusions along with potassium to combat that, as well as liquid potassium since I don't absorb greatly from bananas.

I am heavy into monitoring my fairly actively taken blood work, for this reason. I can adjust supplements, and actually... my doctor does this everytime..... and gets me prescription doses of the specific vitamins or minerals that I am lacking on. Every four weeks, I get blood work taken for my Crohn's to monitor these levels.

Sadly, this is only a piece. Pain is another piece that I need to solve right now. It is a major energy sucker for me, and unless I can offset the pain (which has been pretty intense since my hospitalization), much of this is a moot point.

I am having my doc look into the SSI piece. I am just inquiring to see as he has many different IBD patients. I am still not sure my current job is the right fit from my end, because of the lack of ability to move work around so I can get these infusions, tests, etc done. I have been trying, but it has been difficult for the last month.
29 year old with Crohn's since 1998
Medicines: Remicade (restarting 2/2018), Methotrexate
Supplements: vitamin D, zinc, b12, multivitamin

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16773
   Posted 3/2/2018 11:39 AM (GMT -6)   
Jake, is there a chance of returning back to your former employer, or is that work too much at the present moment too? Are you meaning talking to your dr about SSD, not sure what you mean with SSI. Sorry you are having such a tough time.
Susie
Moderator in Chronic Pain & Psoriasis Forums

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 3/2/2018 11:59 AM (GMT -6)   
I am going to return to my present employer next week (if I can get my body able and willing to by then), but not sure that is a long term resolution for the job I am doing. It is a very active position, one that my mind is willing... but with the lack of time due to the many upcoming infusions and such and my body just not cooperating, I am concerned that I need to step back at least to a part time role somewhere for the time being, at the very least. Does this make sense? Maybe that is the best option is going down to part time elsewhere.

I am talking to them about the SSD... sorry... my nurse used the term SSI when sending me a message. This is just something I am exploring. However, there are some options out there for part time work that would be doable.
29 year old with Crohn's since 1998
Medicines: Remicade (restarting 2/2018), Methotrexate
Supplements: vitamin D, zinc, b12, multivitamin

Anniepooh
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/8/2018 5:05 AM (GMT -6)   
Hey Jake,
Im new here but I just wanted to give you a little positive feedback. Im a 28 year old with crohns since I was 16. I WAS in complete remission for 10 years (after bowel rescetion, no meds or anything). After I had my second boy (2016) my remission ended and I was in a full blown flare. Bowel obstructions, fistulas, hospitalizations. You name it I had it.because of this I Havent worked in 1 year.5 months ago my mother suggested I try disability because crohns wasnt in control. I never thought of filing because I thought I would be back in the work field shortly (Nope crohns had other things in store). Well I relectantly applied with the mindset that this would be a LONG battle. Not to mention I dont have a primary GI doc or Surgeon. Well I applied in november 2017, was sent to see one of their doctors in the first week of febuary and approved 2 weeks later. It took me 3 months to get approved. If crohns is disabling you, I recommend you try to apply for ssd.

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 3/8/2018 11:07 PM (GMT -6)   
Hi Annie,

Thank you for your great response! That is very encouraging to hear. I am in the hospital for the second time in two weeks due to my disease just being out of control. I returned to work for 1 1/2 days in between it all... just has been a difficult month, and ultimately a life changing month at that.

I may look into it, though I have been approached to potentially work part time for a place I worked prior... that basically would allow me super amount of flexibility and probably a majority of working from home, part time. This basically would be one of those once in a lifetime situations... so we will see how that all pans out. Still glad to see this as not being an impossible option.

JakeB
Regular Member


Date Joined Dec 2008
Total Posts : 109
   Posted 3/12/2018 6:47 PM (GMT -6)   
Hi All,

Thank you for your great ideas! I wanted to send an update that I ended up back in the hospital after my first hospitalization, with an extra dose of Remicade (two in a week), cipro/flagyl, and IV steroids. I just started eating today after not eating since last Wednesday.

I remembered that I have a short term disability insurance plan through AFLAC, that I am going to try to utilize for short term to get back on track. The job situation... I couldn't in good conscience give them what they need... so I need to move on for their sake and mine (the owner is one of my friends). It isn't that I am worried about them being flexible with me, it is more or less resentment from my coworkers because I can't hold up my end.

I probably will do some work part time in a short bit, but I think the short term disability will be good to get me over that hump. I need to make sure whatever I am doing, I can do at home, and is fairly easy for me to do. I cannot be stuck with something super complex with time constraints. Too much stress which doesn't help things for me.

Thank you all again for the advice! It is very much appreciated!

Jacob
29 year old with Crohn's since 1998
Medicines: Remicade (restarting 2/2018), Methotrexate
Supplements: vitamin D, zinc, b12, multivitamin

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16773
   Posted 3/12/2018 10:43 PM (GMT -6)   
Jacob, sorry that you ended up back in the hospital. Hopefully these meds will kick in & start helping you. I also think now that you have the employment thing settled this will also help. As sick as you are the added stress about employment surely doesn't help matters at all. I think its great you remembered the short term disability. What a relief. I get it about the co-worker's. Time to concentrate on getting yourself better.

Keep us posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/13/2018 8:34 PM (GMT -6)   
My company has a short term disability policy, which starts on the 15th day of sickness (they want you to use the sick days first). It pays 60% of the pay for up to 11 weeks. It also covers "partial disability". I just think 11 weeks is not long enough. I would prefer a minimal of 9 months to 12 months of rest, which would require LTD.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.
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