A struggle with life since the diagnosis of crohns

Since being diagnosed with Crohns Disease in October of 2009, life has been a constant struggle for me as I'm sure some of you can agree. I'm 28 years old and have been working in the same career field since the age of 18. I was always a "go getter" prior to being diagnosed with Crohns, and my co-workers and superiors knew me as such. Since the diagnosis I have had five rectal abscess/fistula surgeries that protruded 5-6 centimeters deep between my rectum and my genatalia. The most recent abscess actually protruded into the soft tissue of the back of my penile wall. During the course of the hospital stays  obviously missed alot of work and since then I have continued to at least be late to work anywhere from 30 minutes to 3 hours at least once a week, due to fever, severe diarehha, nausea w/vomiting, and severe chills w/severe body aches. I have came to terms with myself that these symptoms and the illness itself is not my fault. During the past year I have also taken the Drug Remicade, in which I'm sure someone here is well aware of. I have always held myself to a higher standard when it comes to the work place, for example; I have always been a dependable, reliable employee, that could always be counted on to be at work. I would also add that I never called in sick prior to having this horrific disease. In fact, I always got agitated at those I worked with who would call in sick on a regular basis. They didn't have a chronic illness, but now I wonder if Karma has came my way. One day I came home from school, still living with my parents ofcourse, while in junior high school, and was told by my mother and father that my mother was HIV positive. She nearly died a few years later, but she is still alive to this day, after having the disease for almost thirty years. What I didn't tell you was that prior to coming home that day, I was approached by a kid at school, who asked me if I wanted to hear a joke. Ofcourse, I told him. The kid stated "Magic Johnson has Aids"! Shortly there after I went home and was told about my mothers illness. I write this for those who are suffering through hard times; know that you are not alone. I'm also writing this because as of recent I have been disciplined at work; regarding and I qoute " My employer stated that my dependability has been an issue as I have been late to work sometimes as much as 2 hours at least once or twice a week due to my chronic illness". Future lateness and absence will result in suspension. So my question to those of you out there that may be experiencing what I am, what do you do? How do you handle somthing that is beyond your control? I know that alot of this passage was a much needed rant from years of depression and suffering; however I hope that someone or several are able to give me some advice and insight. I would also ad that I'm a chronic pain patient from a back and knee injury. It goes without saying that the Crohns disease causes chronic pain.

 

Remicade

Zegerid

Klonopin

 

I work full time as well and it can be difficult to manage when I'm having problems. I have always been totally honest with my employer and colleagues so they know what CD is and how it effects me, normally I don't need any extra support when I'm in remission from the CD but the support from line manager has enabled me to be productive and the best in my job role. This isn't just one line manager as they change every 2 years or so and each time we have a new one then I explain everything again to the new one.

You do need to talk to your HR dept and inform them of your condition and what help and support you need until you can get this thing under ocntrol. If they can give you some slack now then when you get back on your feet you return to your usual self will repay that support. I know this as currently been off since mid Nov with bad flare that is being difficult to get into remission but I've kept in touch with my boss and go in every other week to say hi and bring them up to date and no issues. I am in UK so not sure how the companies and bosses are where you are but would have thought you could call on disability discrimination act if necessary.

Good luck in your ongoing recovery and hope you can sort something out with your employer that helps you both, have you thought about going part time for a while or working reduced hours starting later to enable you to get into work on time.

Wow, what a story. My heart goes out to you and your family. I'm also inspired by your strength and determination. This disease really can have a profound affect on people and some of the best qualities in people shine thru. Good luck in your quest.


Jab(John)

(((denoli82)))

I feel your pain.

I am 2 years younger than you and I choose to give it all up and go on disability.
Instead of struggling all days, I regret it a little bit now but when I have the really bad days I love it.

Hope you feel better soon..

First things first, YOU ARE NOT BEING PUNISHED BY KARMA WITH CROHN'S DISEASE. Crohn's disease is not a punishment for anything any of us have done or didn't do. Like everyone else here, you have an extremely hard disease that most people could not even begin to fathom how hard it is to live with. You are a survivor and will continue to survive.
There has been some incredible advice given to you by all of the above members and I hope that you take heed to their promptings. I would like to help you also, but it would be good to know first what country you are in. If you are in the states and work for a company with more than 20 or 25 workers, you are protected by FMLA laws if you go and fill out the paperwork. Crohn's disease is a tricky disease to gain understanding from others due to the fact that it is typically not visible. On good days, you probably look just like anybody else and not sick. They don't see you before you come into work or when you are home sick and flaring. This is why it is so imperative that you go and fill out the FMLA forms. This will guarentee your job for up to 12 weeks a year without pay. Make sure that you apply for FMLA intermittant so that your time can be broken up over the course of a year. If you are truly unable to work, maybe it is time to file for long term disability first through your company and then through SSDI. This is the course of action that I had to take and it has been a good thing for me. I ended up first in the hospital for a month when I was diagnosed and was never able to return. I had been going through the diagnosis process and a couple surgeries for the year prior and their disability insurance and HR determined that I was a liability to come back. So, they kept me on their long term disability for a couple years and finally they paid a law firm to put me on SSDI or Social Security Disability. If you are able to afford it, you could go on FMLA now, stop working, and start the application period for SSDI. This process can take a couple years and few denials before you are approved, which is why I suggest going on your company's long term disability first. You may get lucky and get approved your first or second time applying like I was and be approved in 3 months. Don't think that you are too young because I was your age when I was first approved for SSDI. If you need any help let me know.

Post Edited (tsitodawg) : 3/19/2011 12:41:20 AM (GMT-6)

Good luck denoli82 and keep us posted on what happens. Hugs!