Community Forum

 Hi, My name is Kathy and I am 41 years old.  I've been dealing with Crohn's for over 20 years now and have worked at many jobs, gotten two college degrees and even travelled a little.  Lately, though, I've really been struggling to handle my problems of Crohn's, work and just life in general. 

How do other people handle full time jobs and deal with the embarrassing problems of Crohn's??  I've been working as a substitute teacher and finding it very difficult to get through the days.  I can't always just make a run for the bathroom and I've had some very difficult times.  I'm starting to think that teaching is not a realistic job for me.

What sorts of jobs do others with severe Crohn's find work for them??  Right now I feel like I need to find a job where I can just work right in the bathroom.

Thanks for any input.

Kathy  

 Reply posted for KeetnaKurk.

Well, I don't know where to begin.  I am only 34 years old, have 3 beautiful children, ages 7 and 9.  I have been in the hospital 3 times since Feb.  And that's when I was diagnosed.  I just had surgery yesterday and they found the crohns on my small intestine and some adhersions.  I am starting to feel much better.  But, there are still going to those days. 

I currently work at a hospital, the same one I work at, as a cna.  I really like my job, but it is a very stressful job and all.  We are in a rural area, so we get lots of people from the little towns around.  I have been here for 10 years and really like it, but I think that it's going to be, in the best judgement of me and my family, that I go part-time.  I definatley don't need to stress.  I have thought alot about this, and think it's for the best.  I can always go back to full-time if I choose to do so. 

Thank you for listening to my story.  The reason why I like to come here, is because everyone listens and if they have had some sort of experience then, then they can fill us in on a few new ways to try things.  God Bless each and every one of you.  Again, thanks fo being here and listening. 

                                                                jdpinkmom

 Reply posted for Battlerun11.

I read your post and I'm concerned about a few things. I want to help. You said that your husband lost his job and that you could get cobra for 18 months but it would not cover the Crohn's for a year. Is that what his employer told you? If so that is not true. As long as you went from that policy while he was employed to the cobra with no break in coverage more than 63 days they can not deny any of your claims. Now if you have let there be a lapse in between polices more than 63 days then you will get hit with the pre-existing. As far as ever getting coverage at a decent rate, it will be hard. You will have to go for a couple of years without problems and then the ins company will review your files and then negotiate a price. When your husband gets another job and  since you have had a lapse of 63 days you will have to wait the yr for a Crohn's visit to be covered. Have you let you doctor know what is going on? Some doctors can get a drug company to sponser meds for you. Also a doctor can choose to treat for free if financial hardship is proven. Also you can negoiate your bills, call the companies and let them know what you can pay and some will write off a portion just to settle. Some people don't know this so they pay the whole bill.All they can say is no, so ask.

I'm also all for natural but I would not want you to get real sick. Email me at clove1017@carolina.rr.com if you have other ins ?'s. I'm a ins supervisor @ a doctors office and I have CD.

 Reply posted for KeetnaKurk.

Hello,

I have a very similar question to the one posted here(as a former middle school teacher I feel for you. Teaching is a challenging job without the added needs associated with suffering from Crohns). 

I am 35 and still suffering from my  initial  flareup  that led to my being diagnosed.  Being a realist I know I need to change jobs, currently I am a catering director, and am interested in hearing more about what career paths people have chosen that have allowed them to keep earning livings, planning for retirement, and still being able to take care of their healthcare needs.  Prior to getting sick I was contemplating returning to graduate school to become a trainer, yet now do not see that as a viable career.
I look forward to hearing about how other people have made their choices.
Joshua

 Reply posted for KeetnaKurk.

Hi Kathy!  My name is Sarah, and I have lived with Crohn's for about 26 years.  I have been through a lot over the years with this disease.  I have had two bowel resections and so many different types of medicines I can no longer tell you them all.  The important thing is that I am still here; coping, raising a family, returned to college and got my bachlor's degree, and working a full-time job.

Although I have been lucky enough to experience some years of remission, I have lived with stomach pain, fatigue, dirrhea, anxiety, and low weight for a very long time.  I recently found myself in trouble again with an obstruction (Nov. 2007).  Remicaid, which was a God send for me, no longer is working.  I am now on Humira.  I am very new to this drug, and I have seen some positive results. 

Working with Crohn's disease has always been very challanging.  I think for me, the challange lies mostly in the fact that people just do not understand the disease.  Insensitivity also kills me.  I cannot tell you how many times coworkers have asked me rude questions like whether or not I have an eating problem (due to my weight) or offering me "body fat".  I believe if your superiors are people you feel comfortable approaching, you should explain the disease and its limitations.  Remember, you are not always feeling crummy.  It is when you are that people need to understand your position and help you cope at work. I know it is not always possible to just leave your post at work...but maybe if you let someone know that it may be necessary...they may be able to help figure out a way to cover your class for the few minutes it takes to run. 

I do understand how difficult work can be, and I hope you can find a balance.

Sarah

 Reply posted for Tishku.

  I was diagnois in Aug 07 at the age of 45 and it was a shocker when I had to take up to13 prescription everyday.

Unfornutaely, one month later my husband lost his job as a import tech and we also loss our insurance. We had cobra for a few months ,but they will not cover crohn's until one year later and you can only have cobra for up to 18 months. Nevertheless, we could no longer afford Cobra. When my husband found full time work in Feb 08 I was told by the insurance company I will never get insurance again for having Crohn's & UC unless I'm willing to pay over $3000.00 a month for a 80/20 policy. I only work part-time so their isn'y enough money for insurance.It is either pay for insurance or pay my mortgage and now we have our home up for sale. Anyhow,our medical bills have exhausted all our savings and we are still paying. Now it's time for a newer approach.

The first thing that has to go is the medicine because That would cost close to $800.00 or more a month. So,I'm experiencing in a more natural way of controlling the fatique, joint pain, mouth sores and severe stomach pains and painful eating. I have found a few things that are working for me right now, but can't say they would work for everyone.

I'm looking into a more quailty of life living than living like a zoomie on all these drugs that damage other organs with long term use and also making pharmacy companies richer as the medicine destroy our bodies in long term using.

This disease will never go away completely. Until then I will explore other options.

Thanks for listening.

 Reply posted for woodfish48.

Remicade was the best for me I have an ilieostomy and have had preinanal crohns also some intermittent blurred vission I recently had by gal bl. out hane had my lg intestine, rectum, anus out due to what they called 20 yrs of uncontrolled U.C now they tell me it is crohns and the remicade cleared everything up for me. I have no flairs I feel like Im 20 again no more bathroom visits every where I go

Mom of 7 adopted

Kathy age 44

 Reply posted for cdsrx08.

 Well, I am not a guy, but do sympathize with your problem! There really is no polite way to tell someone to hurry up in the stalls, unfortunately. I do think it's ridiculous for these men to use the stalls when they really don't need to and make others (such as yourself) wait who really need to use it. I have come to the point where I don't care anymore about using the public bathroom. I used to be embarassed to use it, but after being hospitalized for 10 days and in severe pain and vomitting because the pain was so bad - I've come to the conclusion that this sucks and I'm going to do whatever I have to in order to feel better and if that means stinking up a public bathroom then so be it!

I have asked to cut the line and explained that they don't even want to know how urgently I HAVE to go to the bathroom and they let me through. You have to be more abrupt with people - something I had to learn. I'm typically shy and quiet, but people will take advantage of that, now I look out for myself, no one else will!!

 Reply posted for KeetnaKurk.

 Hi, Kathy. My name's Kathy, also, and I'm 50 and have had Crohn's for about 29 years. Teaching sounds like it would be stressful, and certainly rough for a Crohn's patient. I consider myself very fortunate to have a desk job as a libary clerk. I'm in the Technical Processing area, which is off the public floor. (Believe me, working the public floor of a library can be quite stressful, like working in a department store.Where I am is nice and quiet.) 

I try to be up front with my boss and coworkers about my condition, and when I'm having flare-ups. Not that I want any pity, but I do want them to understand if I'm moving slower than usual, making extra bathroom trips, or going to doctor appointments. They usually appreciate the honesty, and since some of them have medical conditions of their own, they generally get it. (My boss has asthma, one of my coworkers has back problems, for example.) 

If your boss(es) is pretty approachable, you might want to just lay it on the line, and say though you enjoy your work, your Crohn's is making it difficult, etc, and you're wanting to consider working for them in a different area, like office work, or whatever.  I don't know if working a school office, or administration office, would be better--work atmospheres differ. But you might want to just look over your job skills, and if you can teach, you've got some good skills, and think over what other things you can do with them.  I hope it works out, and wish you luck.