My employer gave up on me!! They simply don’t get it!!

[cruxy]

My employer gave up on me!! They simply don’t get it!!

Nine years now since I was first diagnosed with Crohn’s! It is always hard to tell people what’s wrong with me! No one seems to know it! In fact I didn’t know it before I had it! Lucky Me J …

Been treated with 5-ASA (Asacol & Pentasa) at an early stage after diagnosis, didn’t work out! Kept suffering from flare-ups, weight loss and many other weird things that I know you all know…

I was then introduced to steroid, the sorrow Cortancyl, to stop flare-ups then with Methotrexate & Imuran!! But again they didn’t work out, so back to Steroids, until I became dependent to steroids and from then I started Remicade and was happy for the first time when I had a remission for around 2years!!

I am taking Remicade since three years now, 5mg/kg every 8 weeks, here come good news!! During the past 8 months I have experienced THREE severe flare-ups (while taking Remicade), The latest started 15 days ago!! I have lost 7 Kgs already!! And off course back to steroids as the pain developed so bad that I can’t handle it anymore..

Surgery!! But for what?? my Crohn’s was diagnosed initially in my esophagus & stomach, then through the past years, it have spread all over my entire digestive track!! Nice story I guess.. Waiting to see what they want to resection!!

Now, I have been employed in company since over 28 months, and they are upset with the fact that I have to travel back home (when I am in flare-ups or for surgery) to get my treatment since I can’t get the required medical attention where I live for work and can’t get financial aid as well..


I am back to Lebanon for my treatment and for a review of the case to decide on a surgical option, and what I received from my employer, an email requesting a prognosis medical report, so that they can advice me on my return to work!! The fun part here is the fact that I know I am out already once they asked for a prognosis!!


What prognosis I can provide for Crohn’s? What would my Doctor predict as consequences?? Isn't it a fact that we all would like to know what will happen next? Don’t you really wish to know when you will suffer a flare-up? Or what exactly gonna happen?


Do you think that others will come to know what we have or what we suffer from? or I guess "self employment" better suits us?

 

[DustyKat]

Hi cruxy and :welcome:

Wow you sure have a lot to deal! When will you know what treatment they recommend?

I'm sorry to hear about your employer and their request for a prognosis. I assume you must already know that when that question is asked and you can't give an exact answer the outcome isn't good. You are right, I would like to know what the future holds for my daughter but I will never know for sure. Of course there are measures that can be taken to optimise your chances of maintaining remission, like food and diet (have a browse through the forum), exercise, supplements and complementary medicine.

Browse the forums and if you have any questions please don't hesitate to ask. This is a great place with loads of support and info. Welcome aboard and good luck!

Take care,
Dusty

 

[Dexky]

Hi Cruxy, welcome!! If your intention is to fight for this job and you do seem intent on keeping it, you should ask your GI to write a detailed description of your disease and symptoms. I don't know the country you work in or the worker's rights that may or may not be present there so you should also know your rights as an employee in that country. Good luck to you!!

 

[cruxy]

Hi cruxy and :welcome:

Wow you sure have a lot to deal! When will you know what treatment they recommend?

I'm sorry to hear about your employer and their request for a prognosis. I assume you must already know that when that question is asked and you can't give an exact answer the outcome isn't good. You are right, I would like to know what the future holds for my daughter but I will never know for sure. Of course there are measures that can be taken to optimise your chances of maintaining remission, like food and diet (have a browse through the forum), exercise, supplements and complementary medicine.

Browse the forums and if you have any questions please don't hesitate to ask. This is a great place with loads of support and info. Welcome aboard and good luck!

Take care,
Dusty

I am scheduled for ileoscopy, colonoscopy & gastroscopy on Septmeber 17th, I think I would hear something the week that follows...

Thank you for the support, I already feel I have finally found a place to share my case with... Crohn's is not common in the Middle East and therefore I know no one similar to my case...

I will definitely look into the forums... I am doing a lot of readings now...

 

[cruxy]

Hi Cruxy, welcome!! If your intention is to fight for this job and you do seem intent on keeping it, you should ask your GI to write a detailed description of your disease and symptoms. I don't know the country you work in or the worker's rights that may or may not be present there so you should also know your rights as an employee in that country. Good luck to you!!

Hi Dexky,

I do work in Kuwait, and as per Kuwait labor law, I am entitled for 75 days of sick leaves in one calendar year (with partial pay!!) I have already availed 54 days since I have to travel to my home country (Lebanon) for my treatment, especially that I have had 3 flare-ups in the past 8 months!!
Now I am left with 21 days, until the company has the right to terminate my contract without providing me with a notice!! The 21 days will pass as quickly as I can’t go back to Kuwait before I pass the current flare-up and do the required medical tests!!
If my GI provided a detailed description of CD, it will show that there are no guarantees that flare-ups will not occur in the near future, even if I have a surgery, how can we measure the after surgery complication, especially when the GI have to consider my history with CD!!
I think, I am Out!!

 

[Dexky]

So your rights extend to those 75 days and no extenuating circumstances can change that?? You're certainly correct...there's no crystal ball to tell what your future complications may be!! I hope your next course of treatment, be it surgery or other, gets you back into remission soon!! I'm sorry for you if it's not soon enough to save your job!!

 

[Lucy]

Hi Cruxy and welcome to the forum. I hate to hear of anyone loosing their job because they have crohn's. I hope things work out for you. Stress can make your symptoms worse, so as hard as it is please try not to stress out over your situation. Take care of yourself. You have plenty of friends right here if you need to vent or just talk. Hang in there.
By the way I had a boss from Lebanon he was the best person I have ever worked for just a great guy. We moved out of state and I just hated to leave. We still email on occasion. His wife was from Argentina. Keep in touch and let us know how your are doing.

 

[Crohn's 35]

Hello Cruxy :welcome: It is true CD is not common in Lebanon, but we have had a few, one had surgery and must be doing well because he hasn't been on here in months and is trying to start a famly.

This disease is very hard to diagnose for some and control it with meds for it too. I too am in the same boat, but a possible 3rd resection is likely seeing as I have been on every drug and my body either rejects them or they stop working.

Colonscopies sometimes dont always show especially around the Ileum , there is a bend there and sometimes they can't get through it, but they still try and get biopsies which take a while for the results.

Even though Crohns has been around for years, if you havent had it or maybe relative who has it, no one has a clue what this disease entails. Everyone is different and responding to meds is the same.

I am a volunteer in our chapter to help raise funds for awareness as well as trying to find a cure. Awareness is so important, because employers think we just have a tummy ache and finding was to get out of work. WE know it not to be true but if you don't have a clue about the disease, you tend to think she is just whining again...

I get kidney stones and yes they are common in Crohns, and since you are on Pred, memory loss is common, especially if you are not young . I have had 4 kidney stones but Pred helps keep them away. Drinking lots of water helps. Please make sure you have enough calcium and Vitamin D3 that is adequate for your disease and age group. Prednisone and antacids eat the calcium and rob your bones which will create osteoporosis...like we need to add more.

Sorry to ramble, glad you found us, hope to see you around! :hang: Let us know how you continue to do!!

 

[cruxy]

So your rights extend to those 75 days and no extenuating circumstances can change that?? You're certainly correct...there's no crystal ball to tell what your future complications may be!! I hope your next course of treatment, be it surgery or other, gets you back into remission soon!! I'm sorry for you if it's not soon enough to save your job!!

The only extenuating circumstance is when my employer provides me with more support! I am a manager heading a department, and they believe this might affect achieving Services division scorecard!! Afraid for the affect of business continuity!! But more on the bonus I Guess.. I can only hope for the best...

 

[cruxy]

Hi Cruxy and welcome to the forum. I hate to hear of anyone loosing their job because they have crohn's. I hope things work out for you. Stress can make your symptoms worse, so as hard as it is please try not to stress out over your situation. Take care of yourself. You have plenty of friends right here if you need to vent or just talk. Hang in there.
By the way I had a boss from Lebanon he was the best person I have ever worked for just a great guy. We moved out of state and I just hated to leave. We still email on occasion. His wife was from Argentina. Keep in touch and let us know how your are doing.

Thanks Lucy,
I am well aware that stress makes my symptoms worst, in fact they can provoke flare-ups in my case!! I am trying to think of other methods to make my living on the basis of self-employment or through providing temporary services!!

My boss is from UK, and he has been very supportive!! He is the CFO, but unfortunately, our CEO is pushing hard on him as she is not satisfied with the fact that since six months I have been on & off!!

It is always good when you have a good understanding boss!!

 

[cruxy]

Hi Pen,
Thank you for the valuable info, and I am very sorry to hear that you might be going through a 3rd resection!!
I guess it is very essential to increase the awareness of Crohn's disease among people!! This will definitely help in improving our lives and may be to maintain our jobs!! We are at risk to many diseases and we try our best to live life normally... It is a shame to see my employer do what they are doing, after that I spent three years with above expectation performance!! The past six months simply changed everything!! And they have forgotten what I have done to the company!!

I am always doing checks for Vitamins; B12 is always below any average! the max was 26!! I do take vitamin supplements... my worries are that I always feel fatigue and feel as if I am old even though I am still 29... I used to have an excellent memory!! That is at least what I recall... now I read a book and in two weeks I forget almost everything about it!!

My kidneys delivered two stones, they are steady and not affecting me so far... but earlier I had a lot of blood in my urine, they did biopsy from Kidneys and found out that I have something called Glomerulonephritis!!

I am hanging up as much as possible... but only wish that people can comprehend what I have...

Thanks..

 

[girlygirl]

Hi Cruxy,
Hope things work out for you! I was just out of work for 2 wks and was so scared my emp wouldn't understand. I am single and need a job. Its not a good feeling to worry about your job! I'm still learning and its difficult to explain to others. There should def be more awareness!
Good luck! And best wishes!

 

[Astra]

Hi Cruxy
and welcome

It's good to know that your boss is from the UK, and understanding too, hopefully he will know about the prevalence of Crohns over here!
Really feel for you about the job and the demand for prognosis, it's something that we can't answer! Who knows what the future holds for all of us, we just gotta live each day as it comes!
Over here we have the Disability Discrimination Act, and I know it's unfair dismissal to get rid of someone for being ill! If it was me, I'd be doing some digging about my rights and get someone to bat on my side! I wouldn't just accept this as 'the norm'!! cos it's not!
really hope you get some help, you've got enough on your plate with pain!
hang on in there
lotsa luv
Joan xxx

 

[cruxy]

Hi Cruxy
and welcome
Really feel for you about the job and the demand for prognosis, it's something that we can't answer! Who knows what the future holds for all of us, we just gotta live each day as it comes!
Over here we have the Disability Discrimination Act, and I know it's unfair dismissal to get rid of someone for being ill!
lotsa luv
Joan xxx

Well, I am glad too to have him supporting me so far, but unfortunately both of us are expats where we work! both of us have limited rights when compared with that of citizens of Kuwait... we both understand the society we are working in and where we work laws come to the favor of companies more than employees as a result of absence of Unions unlike the case in my home country Lebanon!!

Believe me I am digging as much as I can!! Hoping that at least i would get something in lieu of such dismissal!!

thanks...

 

[Alliabanana]

Hi Cruxy
and welcome

It's good to know that your boss is from the UK, and understanding too, hopefully he will know about the prevalence of Crohns over here!
Really feel for you about the job and the demand for prognosis, it's something that we can't answer! Who knows what the future holds for all of us, we just gotta live each day as it comes!
Over here we have the Disability Discrimination Act, and I know it's unfair dismissal to get rid of someone for being ill! If it was me, I'd be doing some digging about my rights and get someone to bat on my side! I wouldn't just accept this as 'the norm'!! cos it's not!
really hope you get some help, you've got enough on your plate with pain!
hang on in there
lotsa luv
Joan xxx

This is basically how I have been displaced in the UK.

But the way that my employers have gone about it is slightly sneaky yet completely legal.

I was employed on a contract until the 23rd of September, whilst I was having a bad flare up, had been to hospital twice and was back at home licking my wounds I was called into what they called a a "management of care meeting", I sat in the meeting telling them how I was desperate to get back to work/normality and start doing something productive with my day, they suggested that for the time being they would move me into another sector until I was well enough to return. What they actually did was have a mini shake up of the company which displaced allot of people, some people because of this left, others were moved and by the time/very day that I had come off my sick leave there was a new guy with full permanent contract doing the job I had once done "filling in, yeah right", I had been displaced.

When I had first got the job they were aware of my condition completely and also knew how hungry I was for a full contract, they employed me on the premise that there would be full time work for me at the end of the contract, "word of mouth of course, silly me". There was full time work, just not for me and I was served my notice in a legal time frame that fitted in with my current contract.

So now I have a week exactly to go and have no idea what so ever what the hell I'm going to do. The thing that really irritates me is the guy that is in my position now is possibly the nicest guy I have met in a long time and I'm really going to miss working with him.

 

[treehugger]

This makes me so sad!
How could anyone with a heart 'sack' anyone for being sick?? That's awful!

I wish you all luck and this is disgusting!

When I had a flare up working for a very well known company here in Australia, instead of working the front desk, I was sent to the back to do bookwork etc (Lucky for studying business maybe?) Instead of standing, I was sitting on my butt and able to duck to the loo when needed.

They would let me leave early, I had numerous days off (not sure how many) and also got VERY cheap health insurance through MBF.

I guess it must depend on the employer as to how well your treated? Maybe I was lucky as my 'head' boss suffered with diabetes so because we both suffered with diseases, he was lenient on me?

Good Luck and let us know how you go

 

[cruxy]

Such cases became more common! My employer provided me support to certain extent, in the first two years they have allowed me to travel six times a year for my Remicade, they have even paid me the cost of two Remicade shots... I guess they were not expecting the nature of flare up, and they have seen me several times breaking down (appearance wise) when I am flaring up!!

We have an unpredictable disease! We do not know when will be the next flare up! Or how hard the next one will be? In certain countries laws have considered such cases whereas in other such as in Kuwait, it didn't!!

In 20 minutes from now, I will take the first fleet and by 8 pm I will be taking the second... Tomorrow by 9:30 am I am scheduled for a full scope... and I hope I will know why I had three flare ups in 8 months, while on Remicade and pred!! And will speak to my doc about the prognosis medical report my employer asking for!! I'll update you on my doc's feedback on the case!!

Wish me luck, and God help all of us.

 

[Dexky]

Good luck to you Cruxy!! I just caught back up on your story. Let us know what you find out tomorrow!!

 

[cruxy]

Good luck to you Cruxy!! I just caught back up on your story. Let us know what you find out tomorrow!!

Thanks Dexky, I will definitely keep you updated...

 

[treehugger]

Good Luck Cruxy
Sending lots of love and good vibes your way xoxoxo

 

[DustyKat]

Sending you loads of luck and keeping my fingers and toes crossed that all goes well.....................

:goodluck::goodluck::goodluck:

Take care,
Dusty

 

[cruxy]

I highly appreciate the support I receive from all you of you...

Thanks...