WORK AND CROHN'S

[katta]

I JUST WANT TO KNOW HOW CAN YOU GO TO WORK AND HAVE A NORMAL LIFE WHEN YOU HAVE CROHN'S DX?
i have lost so many jobs due to my condition, i am constantly going to the bathroom when i am at work, feeling tired, abdominal pain, and worrying so much to ask for time off to get my ramicade treatment or just beacause i need to go for my check up with my doctor.
please can someone tell me how to deal with it?

thanks
kathy

[KentuckyBeMommaw]

Hm, have you tried to get on ssi?

[katta]

yes! i have tried but i was denied 3 times, so now i had move back with my family so i can stay home but i feel useless and depressed.

thank you

[UncontrolledSarcasm]

Hi Katta,
  Fill out FMLA (Family Medical Leave of Absence) paperwork when you get a job. Your doctor will have to fill out most of it, but it excuses you from work for all your doctor appointments and treatments related to Crohn's. There are laws that your employer has to follow. Mine still gives me a hassle, but I know that by law, I'm covered.
  I also found that having a 1st shift job helps. You get out of bed and don't have as much time to end up totally exhausted from pain before you go to work. I missed a lot more days on 2nd shift. By the time it was time to go to work, I'd been up for hours, in the bathroom a half dozen times and exhausted. Now I'm up and out the door before I have time to dwell on any of the "****".
Hope you start to feel better!

[Hank0303]

FMLA is the best way to go.  I used it at a previous job when I had to be out for over a month due to surgery.  Also, you can try scheduling you appointments either at the end of the day or first thing in the morning.  That way, you're not cutting your day in half to sit in a dr's office.  If you're having to make a lot of trips to the bathroom, ask you dr for Lomotil. It slows your motility so you can eat and not go as often.  It's a terrible medicine, but it does the trick.  Take your vitamins.  I know it sounds corny, but we do not absorb all our nutrients from food because it passes so quickly.  Liquid vitamin B-12 is a great energy source.  Another option, look for something you can do from home.  I worked a lot from home when I was ill.  But, I did event planning and marketing, so I made a lot of phonecalls, mailing lists, etc.  Stuff you can do as long as you have a computer-you don't have to be physically in the office.  Be open and honest with your boss.  I had a great boss when I was going through my roughest times and surgeries.  I know not everyone is that lucky, but with FMLA, you have support.

[katta]

thanks for your comments!!!!!!!! i was not aware that i could use the FMLA

thank you

[dizzybuff38]

Hi katta - I do so sympathsize but  think the underlying medical problem also needs to be addresed, so you can work normally and not feel tied to the bathroom.  Remicade does not always continue to keep the disease in remission. I was dx in 1970 at age 24, so have a long history.  I was on steroids for some 30+ yrs, but still had lots of flares, rectal harmorrhages,hospitalisations etc Luckily I never lost a job, although I did leave one voluntarily as it was so stressful.

I have been on methotrexate (a chemo drug), which is an immuno-suppressant, for the last 6-7 yrs and it has transformed my life immensely. I used to take a 25 mg tablet weekly, but still had bad diarrhea in the mornings until my current gastro switched me to a once weekly injection of 12.5 mg which I do at home - duck soup, takes about 3 mins. Going the injection route means both my gastro and myself know I am getting the meds directly into bloodstream and I have no problems. Taking oral tablets with a known malabsorption problem meant we didn't know how much of the drug I was absorbing. Took a long time to get there! You will need regular monthly blood tests when on methotrexate, but at least you won't spend half your life in the bathroom and will feel much better, able to absorb your food and not the abdominal spasms.

Can you see your gastro for a review of your current meds? You really don't have to live that "half-life" as I used to call it. You deserve better, and the help is there if you seek it out, as I did.

Take care, and good luck - be proactive with your gastro - he is not God!

Liz.

[katta]

thank you so much you don't know how happy i am to find out there is another type of med that can help me, I just went to my doctor yesterday and he told me that i had developed arthritis on my hands and feet and that my eyes are being affected too and i need to go see an ophtamolgist to get steroids eye drops or the retina of the eye can become detach due to the pressure, he said that there was nothing else for me to try the only thing was to increase my remicade to every 4 weeks. now i can talk to him about this med and see what he thinks

thank you so much!!!!!!!!!!!!!

[dizzybuff38]

So pleased I could help. When I got Crohn's 38 yrs ago there wasn't even any literature in the local library and the internet was then a pipe dream. I felt very isolated as it is difficult to talk about this disease, even to family.

Be careful about arthritis in your hands and feet.... only in the last 2 or 3 yrs (I am a young 63 yrs!) have I had serious problems with osteo-arthritis and serious bone density loss.  My fingers are quite deformed and hurt badly.My left hip also stops me from sleeping properly.  I had two spontaneous fractures in both feet last summer - spent a month in a wheelchair and another month on crutches. My doctors, a bc surgeon, as I got breast cancer 5 yrs ago, and my gastro, say my problems are compounded by 30+ years of steroids for Crohn's which does deplete the bones, and now Arimidex which is to prevent a bc recurrence but does not protect the bones. Only last week I saw my bc surgeon and he has referred me to an Endocrinologist to see whether I can continue on Arimidex and possibly get a new drug, Zoledronic Acid, to prevent further bone loss. I already take Alendronc Acid weekly as a tablet, but this new infusion (done once yearly in hospital) can reduce fractures by 30%.

Gosh, I could "talk" to you endlessly, as your "mother" of course.....keep up to date with new meds as I have done - sometimes have had to beg for new meds, but hey ho, I am still here today, smelling the roses.
Let me know if I can help you further - it can be a long, lonely road with crohn's, and until we got the internet, I had never met anyone with this disease.

Love,
Liz in Cornwall, England.

[katta]

Liz talking to you has been very comforting for me, it is very hard to other people understand what we go thru and i really appreciate all your advises and comments i hope we keep in touch.
Also thank you for letting me know about the zeledeonic acid i had heard of it when i got my last remicade infusion, there was a lady having the infusion done and she was talking about it she seem very happy about getting it and it was the very first infusion of that kind done at that particular hospital.
Hopefully i can get it also, i went thru 2 broken legs and just like u i was in a wheel chair, crutches and physical therapy for around 3 mths, i have osteoporosis on my hip, right femur, and spinal cord so i have to be extra careful not to fall or i will brake my hip
also i had to have a complete hysterectomy due to complications with the crohn's and that is not counting stress, deppression, anxiety, panic attacs , thachycardia and pseudo seizures that i get when i have panic attacs which they start when i get belly pain and vomiting i get so scare that i go into a seizure.
once again i appreciate your comments and advises
plz keep in touch!!!!!!!!!!

kathy

[dancepage]

You should not have to live like this.  I've had crohn's 31 yrs. 7 surgeries chop chop chopping away at me,  Remicade, prednisone, asocaol, now humira, you name it. In 2003 , I finally had a permanant ileostomy,  No more pain,  It works great,  very convenient actually.  I have worked all these years and have not had problems with a job except when I was out for surgery.  Thankfully in the dental profession, there are understanding dentists.  It took me a long time to get my mind around an ileostomy, but there is life - and a good one - afterwards.  With a positive attitude and a good gasto,  you should do fine!!!!!!!!!!!

[jackie9]

hi liz i have crohns ten years now and a illeostomy i have just started getting severe pain in ankle joint what med should i take thanks jackie

[benfranklin]

This may help, it is for real.  It has helped a lot of people.

www.kioflife.com

[verysickandtired]

i know what you are going through working in the public i too work in the public and since my chrohns started acting up 2 yrs ago it has been harder to work. i am now having panic attacks that i know that i have created from the environment that i am in. i own a farm and ranch feed store and i lift aleast 2 tons of 50# sacks of feed everday i only weigh 108. the panic attack are very aggrivating. i am always wondering when i might have to go to the bathroom and i might have a customer at the same time. i just wanted you to know that you are not alone and to stay strong.


From verysickandtired

[dommychrons]

maybe you should try a work at home job ... its not the best idea but atleast you will be making some income and feel like you are doing something... i actually have a job where i am on the road all day long ... it was tuff and at times i have to go home cause i cant stop going.. but ive learned to eat very small things or nothing at all during the day .. just drink plenty of fluids to stay hydrated and it seemed to work... i currently had surgery so i am out of work right now.. but i am anxious to get back and see if it has changed at all

[rocco9]

Hi Katta, I'm having the samw problem.I to am on remacade.Stress is a BIG factor in this.My GI docton told me if I could get that under controll its better than all the pill I take.Look into ways to relax.I am and it seems to help.yoga etc.Just read alot and maybe you'll hit on something.At least read and trying something new.Picks u up a bit.There is so much out there away from just the med.s that may help.May I ask are u a stressed person like I ?..........hope i've helped Rocco

[bottomsup]

i was recently diagnosed with crohns. i have had the potty problem since ever. i just tell my workgroup i have bad gut genes and i go to the bathroom often. i even pt up a little flag on my monitor that says "ladies room" just so they know im not off being a social butterfly (which im so often guilty of).

i have lost 15 lbs in the past 3 months- has anyone else experienced weight loss?

[shell700]

New to this forum , I have had crohns for over ten years and had a surgery four years ago. losing 1metre of my bowel.I am about to have a further surgery but I am holding offf as long as I can due to the fact that in my job at present, I have to leave the floor and rush out to the loo around four times in any one shift. I guess I have about 15 motions a day and I have explained this to my employer along with a letter from my gastro guy, They can not sack you for this and they cannot harrass  you for this either,  I take questran every day. As well as many other medications. Love to hear from you

[Vexus]

Wow. This is amazing. I'm sure you have all felt this way at some point, but I was diagnosed with severe Crohn's in my rectum in March 2008. I am 25 years old. I live in a very rural part of northern British Columbia, so the Doctors we get out here aren't the greatest to say the least. I am FINALLY going to see a specialist, which has taken me 2 months to get an appointment. Today, just reading this site and all of the comments you have all posted has been more helpful than talking to 7 different Doctors in almost a year. I cried. I am so frustrated having to find all the information I need by myself. The only medication my doctors have percribed for me have been prednisone and cortisone. I am so tired of having to take steriods. I finally finish a bout of them and I am so incredibly sick afterwards. I catch any little illness going around. Im sure it doesnt help any that I am a waitress. lol. But I am sick for a good 2 to 3 weeks afterwards. I am so sick of being sick all the time. I am tired and in constant pain.  My Docs have kept trying to give me morphine for the pain, but heard it is highly addictive, so I dont take any. Any advice before I go see the specialist would be much appreciated. Thank you all.

Amanda

[merlinhornet]

You can say wow again. I have been on some forums for the past few days and I have never felt so sad.
Im in Australia and I was luckily diagnosed 4 years ago. I have never experienced as much as anyone here and with determination, hope and perserverence I hope you all find something that works for you and makes your lives much easier.
I too started on prednisone and then put onto 8 tablets of sulphalazaline which I am allergic to so they had to prescribe mesasal. I only have prednisone once in a blue moon now with sever flare ups. I have had one anul fistula removed but cannot have any follow up on if I am getting better or worse this is because all the solutions are sulphur based. I have a few friends with crohns and one with a bag for the rest of his life.
There are people out there who are sceptics but here goes. Find a healer or remedial massage therapy. I have had 2 blockages and I have not had to see one doctor or specialist. My work collegues are highly supportive and when I am in a flare up and need rest I have never been questioned.
When I first started on the steroids they did my head in, I was the angriest nastiest person on the planet and I flipped at the smallest things for no reason, not to mention the weight I had gained from them. Then over 12 months I lost 25 kilos and I fluctuate every few months. Since remedial massage I find less cramps, bloating and stress. If you can find that special person who can help you can be happy and less sick then you start to heal on the inside. You might want to have a read of www.bobbyrunningfox.com

[babyphat740]

I have crohn's disease and it is hard for me to go to work because im always in the restroom. Sometimes I don't no what to do. I can't eat the things that I like because its time to go im just tired. Im on asocal its ok but nothing is helping right now, as for I can't go and enjoy different things because im afraid im going to have a flare-up so I just stay home.


                                                                                  

[woodsprincess]

The longer I have it the harder it seems to get, control isnt there anymore.IT must be nice to be healthy. Oh well sorry to vent.

[ak99]

I was on SSD.  I hated it, I was always broke, I live in Alaska and $1200 a month doesnt go very far.   I work from home mostly, I have a camper on my pickup (I am a civil engineer) so my bathroom goes where I go.  The Big D runs my life and I am so tired of it.  Try the questran, its cheap and helps.  I wind up in the ER alot to get fluids and pain relief.  well, you are not alone, though I know it feels that way

[Justicexhaze]

Sorry to hear of your situation. I was diagnosed when I was 7 (44 now).  Jobs/ companies don't understand- it's like if you said you had cancer its"Ohh well then take as much time as you like"  But many times we look fine but are dying on the inside.  The worst thing to hear is "well you look fine"  oh..so that means shut up and go back to work.  You know if you call and try to get insurance its #3 on the turn you down list.  But just try and get SSI right?  I was lucky enough (if you call it that) to be with a company that had long term disability, they in turn have lawyers that specifically work with you to get you SSI.  Will not cost me a cent. Look into The Social Security Law Group.  Maybe they can help...basically you want a deal that they don't get paid unless you get your benefits.  I struggled with work for like 22 years.  Going to work sick, passing out, surgeries..the works..

[bart4u]

I have had Crohn's since I was 15 and I am now 53.  Have to be self employed because of the bathroom thing.  Hard for me to work a 9-5 job being sick and in pain all the time.  I have had three resections.  My life is very hard and nobody really understands what a crapy life we have.  My insurance policy is 15,000 per year and I am in my states high risk pool and it gives me a 75,000 yearly max.  I can not get into the federal program which is half the price with no max because you have to be without insurance for six months.  This was a Republican request so the bill would pass.  The Republicans are very evil people.  I can no longer afford my insurance due to the economy.  I am stressed out and do not know what to do.  Feel like my country does not care about me when I need help.  I wish I lived in Canada.  I must say I am not proud to be an American.  Hope things will change for me but I don't don't see a bright future.