not sure if im disabled?

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LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 5/7/2009 11:09 PM (GMT -7)   
I have been off work for 7 months now. I have been telling my doctors that I cant control my bm's and they keep saying "urgency" but dont get it!!  I finally said I dont have the runs, and have fully formed and solid bm's and still cant stop it from shooting out of me??  I have been on remicade which has stopped the runs, but not the running!  I dont know what to do? I have been thinking about jobs I might be able to do but its hard. I have had close calls at home..so how would I be at a job? My G.I. just gave me powdered immodium and said come back in 6 months> arghhh   Im only going to the bathroom twice a day but..if Im not near a washroom! My arthritis is killing me in my hip and hands. I thought remicade was supposed to help with it? I dont know?  I dont think Id qualify for dissability?
How sick should I be? Any thoughts would be greatly appreciated...   thnk u       Celine

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/7/2009 11:17 PM (GMT -7)   
*sigh*

Celine, it sounds to me as if your disease has not been adequately controlled, and that your doctor has not done the right thing in dismissing your concerns and telling you to come back in six months.

Your urgency issues could stem from a number of things, but I feel uncomfortable with self-diagnosis and can only recommend that you talk to an expert. If your g.i. won't help, then perhaps you could self-refer to your local continence clinic. I *know* that this would be an upsetting thing for you to do, but I suggest it because sometimes allied health workers can put some pressure on doctors to hurry along the diagnostic process. At the very least, they might be able to help you devise some coping strategies.

As far as your arthritis goes, I think it is important to remember that Remicade will not help all types of arthritis. Again, I think that this is something that needs to be checked out by an expert.

I think it is unreasonable of them to expect you to last another six months when you are feeling so sick and disabled, so perhaps you might benefit from talking to your g.p. and seeing if s/he can refer you to a rheumatologist and maybe some other specialists too.

Good luck, and hang in there,

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 5/8/2009 1:34 AM (GMT -7)   
Remicade did not help with my arthritis until I got my third transfusion then it got better thank god.

It sounds to me that you should get a new doc, he sounds like he is not helping you at all, and to say see you in six months when you are feeling like crap is not expectable.
I see my doc once a month just to check up and see how I am doing.

about the disability if you cant function in life I think you would be a good candidate for disability, but I am not a doc.
I am on disability because of Anemia, fatigue, constant pain and I am going 14 times a day to the toilet and so on..


Good luck.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 5/8/2009 9:42 AM (GMT -7)   
Thnk You both for your time. I have an appointment with another g.i. who is overseeing my remicade unfusions. I will bring it up to her and hopefully she will be more helpful. I went to my family doc today and asked for a referral to Rheumy. I havent been to work for soo long that I am on welfare now. Its just sooo hard! Depressed and my family physician is leery to prescribe anything for it. Doctors...Meh! Thanks again. I really appreciate it.
I am 34rs. old mother or 2 wonderful kids. I have crohn's colitis. I am on Imuran, pred., and am starting remicade. My 18 yr. old son has just been diagnosed with crohn's too.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/8/2009 1:02 PM (GMT -7)   
Little Smurf, aside from the arthritis, my symptoms are I guess, similar to yours. My doctor and I consider me "more or less" in remission. The reason we use more or less is because even though my BM's are formed and "normal" they come urgently and I usually have 5 minutes or less to find a place to plop. Are you on any kind of schedule with them. I find that if I get up and don't eat anything I can make it to work, eat, then poop, and be fine for an hour or so until round 2. If I wake up and feel like I gotta go, I just stay home till I go and then go in. Also, I have to drive about 15 minutes from my house to hit bathroom 1 so I guess at any point in my trip I am about 5 minutes away from one (as in i could turn back or keep going). After that there are bathrooms at every exit until I get to work. In my humble opinion (arthritis aside) you probably wouldn't be considered disabled because you could be accommodated at this point. You would just need to make sure that you were always in a position where you could leave to use the restroom. I have that accommodation and at times it can be embarassing but it is better than staying home and having no money. Once, a partner was giving me a research assignment and I had to say, I'm sorry, I have to step out and I will be right back. He knows I have crohns (this was at my summer job, not my new career job) and said it was fine and not to worry about it but I was embarassed that I couldn't wait for him to be done talking to me to go. I guess I thought where I am currently at is as normal as I will ever be. Since it is miles away from where I was when flaring I am ok with that. It is not worth it to me to try stronger meds at this point since I am doing well, minus some urgency.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 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 take xanax prn for situational anxiety (aka no easy bathroom access). 


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 5/8/2009 2:45 PM (GMT -7)   
LittleSis;

Do some reading here.

www.ssa.gov

If it helps, I was approved for social security disability shortly after high school.

I did have an attorney, and had to go before a judge. My attorney told me to focus on excessive bathroom visits, I did, and won the case.

My point being that there are so many things that cd does, if you need to go out on disability for a short time, or longer, it is not that hard to find things which make work impossible.

My advice would be to go ahead and apply, you can even apply online now, plus the longer you wait, the longer it takes to get approved. If you are back at work when you get approved, you have options, medicare being one.
CD dx @ 13 (1987)
Prednisone 10mg every other day
Phenergen PRN
Celexa 20mg day
Zantac 300 - Twice Day
Pain Meds
Vitamins


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 5/8/2009 3:21 PM (GMT -7)   
When I got my disability is focused on the worse days.
I get some good day but I cant hold a job with the few good day I have.
So just say how you are when you are having a bad day.
That worked for me.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/8/2009 4:24 PM (GMT -7)   
homeboy - I'm confused when you say "if you are back at work when you get approved you have options..." I was under the impression you have to be out of work 6 months or more to be approved. I thought if you were working you would be disqualified?
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 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 take xanax prn for situational anxiety (aka no easy bathroom access). 


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 5/9/2009 3:06 PM (GMT -7)   
I just meant that it would be much easier to get approved again if needed, and you would be on the road to getting medicare, where if you didn't apply at all, you would have nothing.
CD dx @ 13 (1987)
Prednisone 10mg every other day
Phenergen PRN
Celexa 20mg day
Zantac 300 - Twice Day
Pain Meds
Vitamins

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