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


 
10-11-2017, 06:09 PM   #61
cmack
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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
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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
 
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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
 
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[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
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[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
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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
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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
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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
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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.

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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
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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
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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
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I would consider another opinion, also it may take time to see improvements from the dosage increase.
10-27-2017, 03:46 PM   #73
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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
 
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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
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Tagging Maya142

Ds was on humira when joint pain started
Rheumo added mtx pills to humira
This helped the joint pain
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10-30-2017, 09:17 PM   #76
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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.
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10-30-2017, 09:26 PM   #77
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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.
02-21-2018, 08:14 AM   #78
Whit
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Hello all and I am very grateful for this support group. I have been dealing with Crohns all my life and in the past few years my ankle subtalar joints have lost most of their cartilage making it very difficult to walk.
My digestive health doc says I can take celebrex along with the MTX I am presently taking. Before I fill the perscription I thought I'd check with the forum and find out about other's experiences with celebrex.
Thanks in advance.
Whit
02-21-2018, 12:04 PM   #79
my little penguin
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Going to tag Maya142

My kiddo has arthritis as well as Crohns
He is currently on Celebrex/mtx and Stelara

Other nsaid do bother my Ds stomach
He just had a scope past week
No damage from the Celebrex
02-21-2018, 05:33 PM   #80
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I have been dealing with Crohns all my life and in the past few years my ankle subtalar joints have lost most of their cartilage making it very difficult to walk.
My daughter has both Crohn's and severe arthritis - Ankylosing Spondylitis. Because her arthritis is so severe, she is allowed to take an NSAID. Through trial and error, we figured out that there are MANY she cannot tolerate at all because they cause stomach pain, nausea, gastritis etc. but there are a few she can tolerate.

Celebrex is one of them. It is easiest on the GI tract. She does need to take a PPI with it to prevent gastritis, but not everyone has to.

I also wanted to ask if you have osteoarthritis or inflammatory arthritis (spondyloarthritis or Crohn's related arthritis/enteropathic arthritis)? Because if it is inflammatory and you have so much cartilage loss on MTX, then you probably need to be on a biologic.

In terms of walking, have you tried orthotics? A podiatrist can make them for you - custom orthotics are much better than using the kind you buy over-the-counter, because they are built specifically for your problems. My husband has significant damage to his subtalar joints and he says orthotics really help. Wearing supportive shoes (sneakers for example) also really helps. Using a cane can help if one side is worse than the other.

An ankle brace also might help. You can get them online or OTC at a pharmacy.

Steroid injections can be done, but are only a temporary solution. However, they can help a LOT with pain, and sometimes last a long time. My older daughter has had them done in her subtalar joints and they helped her a lot. Both my daughters have had many steroid injections directly into joints (hip, knee, ankle, jaw, SI joints) and they have almost always been very successful.
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Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-21-2018, 09:30 PM   #81
jonique
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Hello all and I am very grateful for this support group. I have been dealing with Crohns all my life and in the past few years my ankle subtalar joints have lost most of their cartilage making it very difficult to walk.
My digestive health doc says I can take celebrex along with the MTX I am presently taking. Before I fill the perscription I thought I'd check with the forum and find out about other's experiences with celebrex.
Thanks in advance.
Whit
Hi Whit,
i have Crohn's and inflammatory arthritis and have been taking Celebrex consistently for about 3 years without any problems. I've tried other NSAIDS but they upset my stomach. i have no side-effects with Celebrex.

Over the years, i have taken it with MTX as well as various biologics, without problem.

Good luck!
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Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stelara, Cimzia, Simponi, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
04-05-2018, 01:10 PM   #82
CodeBrown
 
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Hello All! I was dx with CD in 2009 and shortly after started having problems with my left CMP joint (thumb). I didn't really do anything about it and just figured I had injured it somehow doing some home renovations. My regular doctor would always tell me it was just arthritis and that a lot of patients with CD get arthritis. In Nov of last year, I could not longer handle the pain and asked to see an ortho. I was diagnosed with mod-sev arthritis with bone subluxation (coming out of joint). The only option at this point was surgery (steroid injections would only help with the inflammation), as there was bone on bone contact and it would only get worse with time. At the same time I was having really bad shoulder pain on the left side and after MRI was diagnosed with a rotator cuff tear. I was also having problems with my elbow and was told I had carpal decubitis syndrome. It seems that in the past six months to a year, my body is deteriorating quickly as far as joints/tendons go. I am just wondering how to cope with all of this? I'm only 47 years old and I feel really old! I hurt all the time. I went to see a Rheumatologist, but she said my CD was out of control and I had to get that under control before she could treat me. I am not currently taking anything for CD. I tried Cimzia, Humira, and Entocort (as well as Prednisone) in the past, but did not achieve relief and wound up having a bowel resection. Prometheus test indicates I have a very aggressive form of CD, but I am not sure how to get it under control. I'm scared of taking a lot of the medications because of a family hx of lymphoma and I am afraid that the Humira has somehow messed with my heart (I am now having a lot of CHF symptoms - no family hx of HD - seeing a cardiologist). My brother also took Humira (for psoriasis) and is having the same problems.

Does anyone know of any therapies that I could try that do not involve medications that can potentially cause lymphoma? Has anyone tried any natural therapies that work? I am also wondering how those of you with CD related arthritis manage with the arthritis? Do you have just arthritis symptoms or are you having other problems (with tendons, bursitis, etc.)? Will this ever get better?

Sorry for the long post and thank you in advance for taking the time to help a fellow Crohnie!
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04-05-2018, 06:26 PM   #83
cmack
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I hope you get answers soon. I'm sorry to hear of all the troubles you are having, you have my support.
04-13-2018, 11:27 PM   #84
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Joint issues started long before the tell tale Crohn’s signs. My GI was convinced genetic history and joint issues should have at least been enough to get me tested way back then but they focused on the arthritis for me for 10 plus years. Then they looked into Crohn’s and voila, of course. My dad had the joint issues too long before his Crohn’s issues surfaced. I believe there’s a connection but most people I’ve talked to with Crohn’s had the Crohn’s and then developed arthritis.

Since the diagnosis though my arthritis was become way worse then before. I literally thought as a child the arthritis was at its worse but now I look back and think how much a whimp I was. I have a herniation in my spine and my spine in narrowing at an alarming rate. Lack of wrist strength. The list continues. I have already been told by my team—-at 24 years old—- start thinking about what you’ll do when you can’t work at your job anymore.
04-14-2018, 10:12 AM   #85
ronroush7
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I have arthritis in my lower back and am wondering if I have it in my right wrist also.
04-14-2018, 12:25 PM   #86
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I have had enteropathic arthritis (yes, there’s a name for Crohns arthritis) 3 years before I was diagnosed with Crohns and it’s got progressively worse over the years. Remicade has now got me into remission in my gut but the joint pain is still very bad. I’m on opioids through a patch for the un-relenting pain. Some of the large joint pain has decreased with the Remicade so my GP thinks there’s another cause for the arthritis. Possibly psoriatic arthritis, maybe rheumatoid arthritis. My rheumatologist and I are going to have a long discussion about this. I may try marijuana once it becomes legal in Canada. My GP is in full support of that.
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Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
04-14-2018, 12:42 PM   #87
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I'm guessing you're still on MTX, right rrhood1? Have you tried an NSAID? They will sometimes let you try Celebrex if your IBD is under control and your joints are the bigger problem. My daughter has severe arthritis but relatively mild IBD and she needs an NSAID + immunomodulator+ biologic.

We also use a LOT of ice. Voltaren gel might be an option if Celebrex isn't - it's topical so it won't hurt your gut (and it's OTC in Canada I believe).
04-14-2018, 02:39 PM   #88
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Thanks Maya142 - I am still on Methotrexate. My GI is adamant that I not take NSAID of any kind. However, my rheumatologist may have other ideas. We will see in about a month. Ice doesn’t help nor does Voltaren. So far the only thing to bring it under some control is the butrans patches. We also may try CBD oil.
04-14-2018, 03:12 PM   #89
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My kiddo is on pain meds and trying CBD. Unfortunately, we haven't seen any improvement with the CBD but we are still working on finding the right dose for her.

Enteropathic arthritis is a type of spondyloarthritis (SpA). It can affect any joint. Psoriatic arthritis is also a type of spondyloarthritis. They're both associated with the HLA-B27 gene, as is Ankylosing Spondylitis (which is what my daughter has and is also a type of SpA).

You sound very similar to my daughter - anti-TNFs worked wonders for her Crohn's but only helped her arthritis a little.

Large joint arthritis generally runs parallel to IBD - they flare when the IBD flares, and get better when the IBD gets better. But the small joints (fingers, wrists for example) tend to be independent of the IBD. So do axial joints - the sacroiliac joints and the spine. They tend to flare completely independently of the IBD.

There are a few things you might ask your rheumatologist about - increasing your dose of Remicade, increasing MTX, adding something like Leflunomide or Sulfasalazine, convincing your GI to let you try an NSAID (there is a new study showing that NSAIDs don't make IBD flare).

Alternatively, you could switch biologics and see if your joints respond better to Humira or something else.

Remember that having uncontrolled arthritis can cause significant damage to the joints. My 21 year old is having major surgery on her jaw this summer because of joint damage. This is her third surgery in a year on her joints.

My husband (who also has AS) has had multiple hip replacements and has significant damage in his ankles, and SI joint and spinal fusion.

Enteropathic arthritis, if it affects just the large joints, probably wouldn't cause a lot of damage. But it sounds like you have more than just that. If your lower back is involved, you likely have axial spondyloarthritis.

I would check out Spondylitis.org for more info.
05-14-2018, 11:11 AM   #90
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When I was about thitteen, I broke my right arm. Lately, I have been experiencing pain in the right wrist close to that same area Could I be experiencing arthritis in the area where I broke my arm or wrist?
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