Share Facebook
Crohn's Disease Forum » Support Forum » Crohn's and Arthritis Support Group


 
10-11-2017, 06:09 PM   #61
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hello, I have RA & Crohns. I was diagnosed with RA four years ago, and Crohns this past March, so I am newly diagnosed. I live in Canada, and dont know if any other Canadians are on here, but hoping someone can offer some advice.

I work full time, my RA was controlled by was Enbrel, but I believe its now failing. I will be starting Remicade infusions on Oct 20th to treat both RA and Crohns.

Can anyone tell me the pros of disclosing medical information to your employer? does it generally help you, or hurt you?

My employer does not know i have RA, too many people are misinformed and dont understand it, this is not something I plan to disclose to my employer unless I have to miss alot of work because of it.

However, co-workers and supervisor are aware I have Crohn's, my supervisor said she has to report it to HR. So I guess now HR knows. Should I be contacting HR to clarify as I have no idea what exactly my supervisor told them. I am awaiting an MRI in November to determine if I need surgery on a stricture, and Remicade infusions are starting soon. I will be missing some work because of this.

Is it in my best interest to talk to HR myself, and what exactly do you tell them? how much do you tell them? I dont want my absences counted against me, as they are not something I can help. I also dont want any prejudices or hold backs on my career because of my condition. I am well liked and respected, but I have seen they way other employees have been handled, and I am kinda scared.
Hi,

I'm in Canada and if I were you I would not tell them any further details other than what they already know. The first step is to talk to your physician and if they agree that you suffer from a disability, then have them write a letter explaining your situation (permanent disability in your case). This info is between you and your doctor only. After that you need to apply for disability coverage federally. You should call (1-800-ocanada) they will refer you to the proper process and your local facilities where you can apply. Once you have permanent disability status it is your own business and people and businesses face serious penalties for discrimination of disabled people. Don't tell your work at all about your application for disability, everything should remain between the doctor, you and the feds. You are liable to be written off the schedule if they catch wind that you are disabled before you hold that official status. Then you have the right to not be discriminated against.

I hope this helps, if not pm me,

Chris
10-11-2017, 07:20 PM   #62
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
It may end up being provincial but the federal government is where I started and they led me in the right direction. Again, once you get a doctors letter with signature saying you have a permanent disability. Then next you call 1-800-ocanada and they will direct you from there. I'm wishing you the best. It's confidential.
10-11-2017, 10:55 PM   #63
Hobbits
 
Join Date: Sep 2017

My Support Groups:
Is the US there is family medical leave act
Hr typically has an outside company
This protects your job when you need to leave due to Crohns
I would check for something similar

First before talking to hr
Thank you!
10-11-2017, 10:59 PM   #64
Hobbits
 
Join Date: Sep 2017

My Support Groups:
[QUOTE=cmack;990694]Hi,

I'm in Canada and if I were you I would not tell them any further details other than what they already know. The first step is to talk to your physician and if they agree that you suffer from a disability, then have them write a letter explaining your situation (permanent disability in your case). This info is between you and your doctor only. After that you need to apply for disability coverage federally. You should call (1-800-ocanada) they will refer you to the proper process and your local facilities where you can apply. Once you have permanent disability status it is your own business and people and businesses face serious penalties for discrimination of disabled people. Don't tell your work at all about your application for disability, everything should remain between the doctor, you and the feds. You are liable to be written off the schedule if they catch wind that you are disabled before you hold that official status. Then you have the right to not be discriminated against.

I hope this helps, if not pm me,



Chris[/QUOTE

Thank you so much!
10-11-2017, 11:03 PM   #65
Hobbits
 
Join Date: Sep 2017

My Support Groups:
[QUOTE=Hobbits;990712]
Hi,

I'm in Canada and if I were you I would not tell them any further details other than what they already know. The first step is to talk to your physician and if they agree that you suffer from a disability, then have them write a letter explaining your situation (permanent disability in your case). This info is between you and your doctor only. After that you need to apply for disability coverage federally. You should call (1-800-ocanada) they will refer you to the proper process and your local facilities where you can apply. Once you have permanent disability status it is your own business and people and businesses face serious penalties for discrimination of disabled people. Don't tell your work at all about your application for disability, everything should remain between the doctor, you and the feds. You are liable to be written off the schedule if they catch wind that you are disabled before you hold that official status. Then you have the right to not be discriminated against.

I hope this helps, if not pm me,



Chris[/QUOTE

Thank you so much!
Does having Crohns mean I have a disability? I'm not sure I would qualify for a disability because I can walk and function. Does a crohnic illness count as a disability?
10-11-2017, 11:09 PM   #66
Hobbits
 
Join Date: Sep 2017

My Support Groups:
It may end up being provincial but the federal government is where I started and they led me in the right direction. Again, once you get a doctors letter with signature saying you have a permanent disability. Then next you call 1-800-ocanada and they will direct you from there. I'm wishing you the best. It's confidential.
Thank you for the information. It is very helpful. I have no one who knows about or understands these things.
10-12-2017, 09:04 AM   #67
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi, Hobbits

You need to have a talk with your doctor about how your diseases CD and RA are affecting your life and work in general. Then the doctor may decide to support you with a letter regarding disability status. Since CD and RA don't go away, only into remission, I think you would be considered to have a type of permanent disability. It's not like it's going to make it so you can never work again, but you will be covered somewhat if you miss time at work due to flares or other medical issues like pain from the RA. It is also a way harder to be "let go" because of absences if you have disability status.


Best regards,

Chris
10-27-2017, 02:29 PM   #68
Ih8crhns
 
Join Date: Jun 2017
Location: New York

My Support Groups:
Hello peeps! Looking for a little advise. Diagnosed Crohn's spring of 2016. Pretty hard headed so really did not do any thing until after x-mas 16. Got tired of crapping in the woods walking my dogs Started remicade and it was working great then came June and it was not a couple of weeks after an infusion and my joints started going nuts. Hands ankles knees elbows neck feet wrists, ect. Called GI and he wanted nothing to do with it. Next came my Rhuemy. U have Crohn's Arthritis. i mean i could hardly move. my stomach seems fine no urgency pain none of that. So Doc jumps Remicade from 6 to 8mg? every 8 weeks still. Had infusion Aug 25. maybe had 1 week of solid releif. Had infusion 10/25. Still have pain. Tired of thinking Remicade is going to work. Should i not be pulling the plug on Remicade? Need some dam releif. Feels good to get on here and vent. Few! I swear there is smarter people on here than some of these Doc.
10-27-2017, 02:39 PM   #69
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Hello peeps! Looking for a little advise. Diagnosed Crohn's spring of 2016. Pretty hard headed so really did not do any thing until after x-mas 16. Got tired of crapping in the woods walking my dogs Started remicade and it was working great then came June and it was not a couple of weeks after an infusion and my joints started going nuts. Hands ankles knees elbows neck feet wrists, ect. Called GI and he wanted nothing to do with it. Next came my Rhuemy. U have Crohn's Arthritis. i mean i could hardly move. my stomach seems fine no urgency pain none of that. So Doc jumps Remicade from 6 to 8mg? every 8 weeks still. Had infusion Aug 25. maybe had 1 week of solid releif. Had infusion 10/25. Still have pain. Tired of thinking Remicade is going to work. Should i not be pulling the plug on Remicade? Need some dam releif. Feels good to get on here and vent. Few! I swear there is smarter people on here than some of these Doc.
I would as ask the doctor about other medicine instead of Remicade. I might consider seeing a rheumatologist.

__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-27-2017, 02:44 PM   #70
Ih8crhns
 
Join Date: Jun 2017
Location: New York

My Support Groups:
i am seeing a Rhuemy. His thoughts were to optimize the remicade. My thought is the remicade has always been there. Why is it not working!? Could it be the culprit? prednisone does not even touch this garbage.
10-27-2017, 03:36 PM   #71
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
i am seeing a Rhuemy. His thoughts were to optimize the remicade. My thought is the remicade has always been there. Why is it not working!? Could it be the culprit? prednisone does not even touch this garbage.
I wonder if you have built up antibodies?

10-27-2017, 03:40 PM   #72
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
I would consider another opinion, also it may take time to see improvements from the dosage increase.
10-27-2017, 03:46 PM   #73
Ih8crhns
 
Join Date: Jun 2017
Location: New York

My Support Groups:
I wonder if you have built up antibodies?
I had the Prometheus test. No Anti bodys.
10-27-2017, 07:24 PM   #74
More Than Pickles
 
Join Date: Jun 2017
Location: Rockledge Florida

My Support Groups:
I had almost the same situation. Joint pain that started after starting Remicade in late ‘16. Saw a rheumatologist. Started on MTX injections once a week, maintained the same 5mg per kilogram of weight of Remicade every 6 weeks. Within 6 weeks I started seeing improvement. I still get joint pain from time to time, on week 18 of MTX, but no where near what it was before. You need to stay on the Remicade. Just add something for the joint pain that comes with Crohn’s! Yeah ..... best of luck.
10-27-2017, 09:43 PM   #75
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Tagging Maya142

Ds was on humira when joint pain started
Rheumo added mtx pills to humira
This helped the joint pain
__________________
DS - -Crohn's -Stelara -mtx-IVIG
10-30-2017, 09:17 PM   #76
MizzSarah
Senior Member
 
Join Date: Oct 2016

My Support Groups:
I also am in Canada. I still work but had to put in an absence leniency accommodation through my job. Basically as an assurance that I could not be let go due to illness etc. The only people that know is the disability liaison through HR who basically lets whoever needs to that I have an accommodation. No details of my actual conditions is told but they do verify that I have an existing accommodation. (It's a pain to have to renew this every year though)

I always advise people to never disclose your medical condition unless there being no way around it. If you do persue getting permanent disability keep it strictly need to know basis. It's always great to have as a back up plan.
__________________
Crohns Disease
2014
Meds: Humira & Entocort
2nd Gen affected
10-30-2017, 09:26 PM   #77
MizzSarah
Senior Member
 
Join Date: Oct 2016

My Support Groups:
I had arthritis mimicking issues long before I was diagnosed with CD. My joint pains have only intensified since diagnosis. I now have a narrowing spine. Saw a rheumatologist who says it's Crohn's related arthritis but it's concerning to the extent of how quickly my joints are deteriorating that she wants me to up my dose of Humira. I'm 24 years old. Recently had to quit one of my physically demanding jobs as a result of the quick deterioration. I've always made sure to have vitamins evetydsy since I was a young child and unfortunately even that has not helped.

I have two MRi's to examine the extent of damage but besides that I'm pretty much at a loss.

Definitely get a second opinion while you can. Do everything you can do before it worsens. The CD we eventually learn to cope with but once your joints are shot it's hard to come back from.


Hello peeps! Looking for a little advise. Diagnosed Crohn's spring of 2016. Pretty hard headed so really did not do any thing until after x-mas 16. Got tired of crapping in the woods walking my dogs Started remicade and it was working great then came June and it was not a couple of weeks after an infusion and my joints started going nuts. Hands ankles knees elbows neck feet wrists, ect. Called GI and he wanted nothing to do with it. Next came my Rhuemy. U have Crohn's Arthritis. i mean i could hardly move. my stomach seems fine no urgency pain none of that. So Doc jumps Remicade from 6 to 8mg? every 8 weeks still. Had infusion Aug 25. maybe had 1 week of solid releif. Had infusion 10/25. Still have pain. Tired of thinking Remicade is going to work. Should i not be pulling the plug on Remicade? Need some dam releif. Feels good to get on here and vent. Few! I swear there is smarter people on here than some of these Doc.
Reply

Crohn's Disease Forum » Support Forum » Crohn's and Arthritis Support Group
Thread Tools


All times are GMT -5. The time now is 07:59 PM.
Copyright 2006-2017 Crohnsforum.com