Crohns and working.

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Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/10/2010 10:52 AM (GMT -7)   
Hi everyone! I hope you are having a good day. My son was diagnosed with Crohns last year. He's 23 years old. He gets Remicade every 6 weeks, but it starts wearing off after about 4 weeks. He hasn't been able to work. What I want to know is, what percentage of Crohns patients are actually able to go out and work?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/10/2010 11:11 AM (GMT -7)   
I work a full time job and have been at the same job for 20 years. But.....some folks are on disability because they have severe Crohns.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/10/2010 11:17 AM (GMT -7)   
hey, sorry to hear about your son. I work 2 jobs. Ive had cd since 1970, first surgery was emergency blockage and dr's removed 8ft of disease, I went into surgical induced remission and went back to work in 10 weeks, but before that surgery there was 8 months of total disability with 2 surgeries trying to prevent cutting away small intestine, but blockage made that necassary. then glorious remission. by the way I was a professional horse jockey, and had a very positive attitude towards my cd and work, now I have 2 jobs. I call in sick at my8-5 job 2-4 times amonth my 2nd job I am an artist so I work out of my house. but that job I make willow furniture and am outside for that harvesting my own willow's and delivery my work all over southern cal. so I eat very healthy and stay very fit. my med's now are pred 15mg and imurn 50mg. I have inflammation were it has been resected twice. some can't work, it can be disabling, and some go on permanent disability. I have a kid in college and a mortgage, gotta pay my bills,
artist guy


artist guy
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Date Joined Jan 2010
Total Posts : 1373
   Posted 2/10/2010 11:23 AM (GMT -7)   
by the way there are severe to mild to moderate, so it depends on the stage of cd, my stomach i would say is mild, but it has moveds up my throat and canker sores in my mouth, that was serious to me that's why im on the pred. and imuran, very strict diet of 95% vegan,

artist guy


Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 2/10/2010 11:27 AM (GMT -7)   
Well... I wonder about that too. Almost posted it myself.

Dignosed in 1994 - 19 y/o
2007 missed very few days
2008 missed 2,5 months (pre and pos surgery)
2009 missed 15 days (but went to work in bad shape some days)
2010 missed only remi infusion days so far.

I've read once some docs (congress reports) saying that about 20% of their patients are "disabled". But it was not a research.
 
Brazilian sick fellow...
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa and Imuran
Blockage - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 mg Imuran + Iron
 


Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 2/10/2010 11:29 AM (GMT -7)   
Thanks Nanners and artist guy for your replies. My son is on insurance of Parkland hospital here in Dallas which pays for everything. It's a public hospital. It's ironic. He was born there. He lives with us. Until he goes into complete remission, there's no way he can work. I feel so bad for you guys.

artist guy, don't they get upset when you call in sick that many times?

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/10/2010 3:21 PM (GMT -7)   
I've had CD for almost 22 years. I've worked part-time for all of that, but I was working part-time when I was diagnosed because I had a one year old at home and that was the way my husband and I wanted to raise our children. I have missed very few days due to illness, other than hospitalization. I figure, if I am only working a few days a week, or a half a day, I really need to be "bad" to take the day off. I can suck it up for one day and rest the next day.

I have a friend with CD who has 4 small children and still manages to work every other weekend as a nurse. I know 1 guy with UC and 1 with CD who work long days as engineers and don't miss much time. 2 of them are in remission and one was diagnosed recently but seems to have found a treatment that is working.

Hopefully your son can find a medication that will work well for him and he can be on the road to remission soon. There is hope for a relatively normal life.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 2/10/2010 4:21 PM (GMT -7)   
I'm 23 as well. I was diagnosed when I was 16. I have had 3 resections, 3 abscess surgeries and my most recent surgery was in Nov to repair an abdominal fistula. I have never been in remission and I'm working 32 hours a week. I was working 48 but my hours were cut due to the economy...I'm currently looking for a 2nd part time job.  My GI has suggested that I try to go on disability but that not an option in my mind until I feel I can physically not take working anymore.  Thus far I haven't found any meds that have worked for me, but hopefully in the future I will.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 2/10/2010 5:22 PM (GMT -7)   
I work full-time too. I was out of work for 2.5 months last year due to a severe flare-up, and miss occassional days due to drs appointments, sick days, and will miss about a week due to an upcoming surgery. But my work is very supportive and understanding of when I need to be out, and they even let me work from home on days when I can't move but can think straight (I have a desk job). If I didn't have my job I would go absolutely nuts, so I'm very thankful to be able to come in every day.
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009
**Asacol (4000 mg daily), 6-MP (100 mg daily), Prednisone (30mg daily...for now), Nexium (40 mg daily), Flagyl (500 mg daily), Sulfasalazine (1000 mg daily), and getting ready to start Humira
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 2/10/2010 6:08 PM (GMT -7)   
I work full time, but consider myself to have "mild" CD. I had surgery in 2008 and was out for ~4 weeks. Other than the time off for surgery, I haven't missed a day of work because of crohn's (diagnosed ~4 1/2 years ago).
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Ileocolectomy 4/08. Back on Pentasa as maintenance.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 2/10/2010 6:15 PM (GMT -7)   
My dx was in 1989 and I worked full time (and for someone else) until 2004...mainly missed work when I was in the hospital/recovering and was on STD for 4 recoveries. I had a small child (during a 5 year flare) and was very motivated to be "normal"...my employer was understanding to a degree but I am sure they didn't want to be!!!!

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 2/10/2010 7:37 PM (GMT -7)   
I've worked like crazy from 1977 until about 10 years ago and then just normal 40-50 hours a week. I haven't missed much work over the years until now with a severe flare I have been out three weeks. What does your son do that requires complete remission to return to work? He may have to make a career change if he isn't able to achieve that level of recovery. :(
 


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/10/2010 10:40 PM (GMT -7)   
I have what is called an On Going medical, or OGM. we are federally allowed 84 days a year off due to illness, if you have proper paper work , there are forms to fill out. so I take mind on going, so with permission i can call in sick 84 days a year, if they fired me for that I could sue them for predjidist again illness, they don't like it, they legally they have to, I'm a good employee, but when I don't feel that good, it's not worth it for them for me to be at work, I'm a table games dealer at large casino, blackjack and poker, so when I'm at work I'm on stage, they want me feeling in front of their guests, they're pretty understanding for a funky business like casino's.

artist guy


BWS27
Regular Member


Date Joined Nov 2009
Total Posts : 37
   Posted 2/10/2010 11:04 PM (GMT -7)   
Potsie, first off I'm sorry to hear about your son having to deal with this "oh so fun disease". I recently was diagnosed with Crohns after a emergency resection about a year ago. BLAHHHHH, let me just say that first! I have been in a battle to find the right treatment for the last year, finally found that Remicade every 8 weeks has been working fairly well. Unfortunately my doctor thinks that it was to late and I might still need another surgery to remove the scar tissue causing me troubles. Anyway, I work a full time job with the Washington State Department of Corrections as a Correctional Officer, which at times can be a very physcially demanding job. I have had nothing but support from my employer for the most part. I think that the fact that I was employeed with them from the start helps a lot. I am not sure where you live, but most states have some sort of Family Medical Act that covers time off for medical problems for either yourself or family. For example I am guarnteed 12 weeks of "no questions asked" leave from work, granted I have to use leave that I acquire or go without pay. But, I can not be punished or looked over for promotion based on any leave issues while in the 12 week window. I can use them at anytime and do not have to be in a row. I believe that there is also a federal family leave act that your son can fall into if the employeer does not recoginize medical leave. His troubles may be with finding the employment since he is not currently working. I wish him the best of luck and be sure to let me know that many of us are fighting the same battle while working fulltime and living a semi-normal life!
29 year old husband and father of 2, Diagnosed with Crohns and resection surgery in Jan '09 (same ER trip), currently not winning the battle with pain, taking: 6mpPentasa, Prednisone and every vitamin possible! 
 
 

What lies behind us and what lies before us are tiny matters compared to what lies within us." -- Ralph Waldo Emerson



littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 2/11/2010 9:20 AM (GMT -7)   
I have a desk job and work full time. I am covered by the Disability Discrimination Act (UK) I get time off for my infliximab infusions, doctors and consultant appointments. I have had 19 days sick leave in the past 12 months. So all in all my employer are pretty good about things. I dont know what I would do though if I had a manual job
Diagnosed 2005.  41 year old female living in UK
 
Current medication  -  infliximab infusions, ranitidine, Vitamin B12 injections, anti depressants


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 2/11/2010 10:08 AM (GMT -7)   
I have had CD since I was 15.  I am now 36.  I missed my last two years of High School but got home study and graduated on time.  I went away to college and had jobs while there.  Since graduating the only time I wasn't working was when I was out of a job.  I have done many things from cooking in a kitchen, customer service at an airline, Barista at Starbucks, and even worked on a cruise ship in the galley. 
 
My point is everyone is different.  I have been one of the lucky ones that has a mild case and I won't let it slow me down.  I always tell my employers about my disease so when I do get sick from it or have to do a colonoscopy, it won't come as a shock.
 
I do have a question for you though.  How long has your son been on Remicade?  If he isn't better then maybe it isn't working and he needs a different drug.  Also, has he looked into jobs that you can do at home?
 
I hope he feels better and good luck to him.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/11/2010 5:15 PM (GMT -7)   
going on bw's post we have what is called a family leave of absence, or FMLA. so, lets say here in california where it is a state law, If my daughter was to become sick and needed me to either miss days to care for her or take time, I can actually get paid by the disabilty act, or state disability to care for my daughter, it has to charted and so forth, now for myself i can take and can get 84 days a year off, without dicrimmination, now i can't get paid unless I'm off for at least 8 straight days and get a letter from my dr. saying I need to be off due to my cd. and believe me if i were to ask my dr. to sign paper for disability by state, she would have no problem with that at all, and I might this summer if I feel the need to take 4 wk's if I have the days left, that way i can get paid for 3 wk's disability let's 7 days go before your pay starts.

artist guy


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 2/11/2010 8:42 PM (GMT -7)   
Djin said...
Well... I wonder about that too. Almost posted it myself.

Dignosed in 1994 - 19 y/o
2007 missed very few days
2008 missed 2,5 months (pre and pos surgery)
2009 missed 15 days (but went to work in bad shape some days)
2010 missed only remi infusion days so far.

I've read once some docs (congress reports) saying that about 20% of their patients are "disabled". But it was not a research.

I was just wondering... saw your meds...  I'm on Remicade and will be starting Imuran.  Did you have any side effects from Imuran?  Thx. 


Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 2/11/2010 8:56 PM (GMT -7)   
I feel I have a "dream" job for a moderate to severe CDer.  I work a part-time flexible schedule of my own choosing and get paid for full time with benefits.  As long as my work gets done albeit at my office or home office, they don't care what time of day I show up. NICE.  However, when I do take the occasional "I'm being held hostage in the bathroom" day, I get charged for taking a full 8 hour day.  Whatever. In the last 11 years I have worked with this firm, I have never exceded my leave time.  Including when I was out 3 weeks due to my resection. I am a pharmacy administrator and bookkeeper.  I've been in this field for over 20 years and I'm bored out of my gourd but too scared to make a move because of the CD & my age.  So I settle...shut up...and pray they don't decide to let me go.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 2/11/2010 9:10 PM (GMT -7)   
I install and repair commercial garage doors. I am usually working 40-60 hours a week with no Bathroom or if there is one, its probably one of the most filthiest ones you guys will ever see.
I have to lift heavy things all day long and it sucks because I am in a big time flair. I've already been threatened by my boss to get fired because he thinks I will have stomach pain and fall off a ladder or get someone hurt, which I will never do.

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 2/12/2010 11:32 AM (GMT -7)   
sickofitall said...
Djin said...
Well... I wonder about that too. Almost posted it myself.

Dignosed in 1994 - 19 y/o
2007 missed very few days
2008 missed 2,5 months (pre and pos surgery)
2009 missed 15 days (but went to work in bad shape some days)
2010 missed only remi infusion days so far.

I've read once some docs (congress reports) saying that about 20% of their patients are "disabled". But it was not a research.

I was just wondering... saw your meds...  I'm on Remicade and will be starting Imuran.  Did you have any side effects from Imuran?  Thx. 

Starting imuranis alwais the same for me, did it 3 times. In the beggining, some nausea, then (7-10 days) nothing more.
 
I must say that combining Remi with Imuran helped a lot - so far.
 
Good luck.
 
Brazilian sick fellow...
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa and Imuran
Blockage - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 mg Imuran + Iron
 


hld4good
Regular Member


Date Joined Jan 2010
Total Posts : 193
   Posted 2/12/2010 2:22 PM (GMT -7)   
I was fortunate. My disease always attacked the same location - my terminal ileum. I had three bowel resections and one fistula repair over 37 years and I have worked throughout, with brief periods of inability to work. Sick leave and short term disability benefits help. I think all of us discover which foods work for us, which meds work best, and the rest is making a commitment to get enough rest, avoid the dramas at work, and enjoy the life we have today. He is not destined to life-long disability, although sometimes it happens even when the person does everything possible to take care of themselves. And, then, there are the blessings. I learned how to persevere and to be thankful for each day of life. Getting enough rest in my twenties was a huge challenge. My mind wanted to go, go, go, but my body didn't cooperate so I learned to prioritize and avoid pity parties. I wish you and your son the best. This site is the best for support and venting frustrations.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
probiotic
digestive enzymes
L-glutamine powder 3 times a day
sublingual B-12 and B complex
2 T. cod liver oil
2 tsp. tart cherry juice concentrate
Multiple vitamin, 2,500mg vit. C, 1,000mg calcium mag.


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/12/2010 2:35 PM (GMT -7)   
I have severe disease - have for the last 2 years or so. I miss quite a bit of work but my job is quite accomodating (I work full-time and have full benefits, thankfully). This year I've only missed a day and a half from being sick, 2 or 3 others for doctor's appointments and tests. I really try to make it in as much as I can, but usually my boss is the one telling me to go home and rest. I'm pretty lucky I guess. I also do office work which helps, and we have very clean bathrooms, thankfully.

champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 2/12/2010 9:52 PM (GMT -7)   
WOWSA ... this post is like a war memorial wall, so many postings.... Amazing to see what we all collectively struggle with. I respect you all.

I'v been very fortunate in the past, although I'm fearful of the future:

Sick in 2003, Dx in 2004, took 2 months disability (I worked then for a GREAT Corporation that made it happen) in 2005 and really needed more, I had been traveling 20 weeks a year and having D about 20/30 times a day when I chose to eat. Severe pain and symptoms.

In remission for the most part by this time, didn't miss any work from later 2004 to 2009, moved from CA to IA. Not on any Crohn's maintainence meds (BIG mistake - I thought if I was remission, didn't need them!) and got the swine flu. Set 10 weeks of severe pain/disability and hospitalization and recovery into motion. I was not working so I didn't have to miss work.

I just got a job this week - YEAH! and I feel that finally my I've got my diet, supplements, symptoms, RX (Imuran even after 4 weeks seems to be working, imaging? Tapering off prednisone.) so the time is right. Only thing is new employer doesn't offer sick days nor health insurance although they said they are "trying" to get health insurance.

So this scares me ... my COBRA benefits are going to run out soon .. tic toc.

Artist Guy ...do you live in the US? Your employee benefits with sick leave seem very generous?
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 


Notuffda
New Member


Date Joined Feb 2010
Total Posts : 3
   Posted 2/13/2010 8:10 AM (GMT -7)   
I was diagnosed with Crohns in 2004. I had flare-ups on and off for quite some time, but still managed to finish college and get a job. 2 years ago, I was extremely ill and couldnt work for some time. I had tried Remicaid (among the list of others) and it wasnt sufficient. I was in the process of filing for disability and ended up losing my colon. I now have a love/hate relationship with my ileostomy. I hate having one, but it gave me my life back. No disability, slowly working on graduate work and working at a job I love. There is hope out there and as far as the Remicaid goes, have your son ask his doc about changing the dose/time frame. When I was on it, they tried some different doses, even giving me twice the amount. I also didn't wait the 6 six weeks as mine would wear off after about 2. So, maybe they can change your son's dosing to every 4 weeks instead if its working. I think the idea is that he gets the treatment before the flare-up begins.

Good luck and there is hope!
Notuffda
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