Diagnosed yesterday

[Mr D.]

Hi everyone,

New here and just found this place after doing some googling on Crohn's which I was diagnosed conclusively with just yesterday. It's someone a relief to know that this forum is here. I've had a browse and it seems like a good resource for information. I must admit, though, some of the things I have read have scared me a little. It seems like this disease can be more severe than what I first thought.

I felt like posting in here because I feel like I should introduce myself as I get the feeling I'll be coming in here a lot now that I've been diagnosed and now that I know this great resource is available. Also because I've had a bit of an emotional day and I feel like I just need to write something and hope it can serve somewhat as a type of catharsis.

So basically my life was super happy and perfect in 2011. I had just finished my uni degree, spent some time travelling the world, then came home and landed my perfect job. 2012 came and I met my girlfriend and everything seemed great. At the time I had noticed that I was using the toilet a lot more frequently usual but I just dismissed it as perhaps being the result of a hedonistic lifestyle, maybe increasing stress and some bad diet choices. Things got worse and worse and I noticed I was passing blood intermittently.

It reached a point where I was afraid to leave the house without taking loparamide (Imodium) tablets. Things got bad at work because I was constantly late. I would wake up and try to flush out my system early in the morning then dose up on loparamide so that I had the confidence to make the 45 minute journey to work without needing a toilet. I was constantly late to work and felt the topic was too embarrassing to tell people at work about, so ultimately everyone just thought I was always late because I was lazy. As it got worse I would only leave the house for work or when I absolutely had to. I became really antisocial and never wanted to leave the house out of fear for not being near a toilet.

I went to a doctor and he said that because I had travelled to so many developing countries I had probably caught some parasitic illness, or some exotic bacteria which was causing my excessive diarrhoea/bloating/malabsorption. He gave me all these antibiotics to nuke anything that was living in my digestive system but it didn't make the smallest bit of difference, and then I spent some time trying different IBS probiotics also with no improvement.

The illness took it's toll on my relationship. I'm 30 and she's 28. She tries her best to understand my condition but I don't think she really understands the fear I have in leaving the house and why I've become somewhat agoraphobic. She still likes going out on the weekends and the outdoors etc, so this illness of mine has really pushed us apart. I am wondering if maybe it's better for her if I just let her go so she doesn't need to have me holding her back regarding what she wants to do. I tell her to go out without me with her friends and she does, but she's always disappointed when I refuse her and whilst she's done her best to support me, I notice that lately I just really like being alone.

A few months ago because of my excessive bowel movements, I got a hernia too, so now I'm on the waiting list for surgery for that. To make matters worse I was made redundant from my job a couple of weeks ago (not because of illness - just due to company closing down) and I am not financially well off enough to endure being unemployed for more than 8 - 10 weeks. I need to find a new job but I am worried about what conditions will be like at a new unfamiliar workplace. How can you possibly ask a prospective employer whether or not your new job will include easy access to a toilet at all times? Furthermore I am worried that if I disclose my condition that I will be discriminated against with regards to them selecting someone.

Yesterday the gastroenterologist told me I had Crohn's disease. He said my intestine was riddled with ulcers and that I had a fistula too. All these terms were completely foreign to me until then and I am still trying to digest (pun intended) all this information. He has prescribed me Pentasa, Prednisolone, Imuran and has said that after 3 months I'll go on the humira too, which scares me because I hate needles. (I've always been a terrible patient at hospitals/doctors). I have no idea what all these things are and what affects they'll have. I just want my quality of life back. I had my 30th birthday last week. Everyone asked me what I was doing for it. Bar? Club? Party? Getaway? Nope, just flushing my system out in preparation for a colonoscopy.

Today I cried for about an hour. The last time I cried was about 10 years ago. I'm not really an emotional person but I guess this was the straw that broke the camels back at a time when I already felt so much stress. I'm trying to be rational and look at the bright side. I'm having a bad day today but I keep telling myself the following things:

- It's 2013. I should be grateful that I am not living in 1913 when things would have been much worse for people that are ill.
- Modern medicine is a wonder and whatever treatments there are today are only going to get better tomorrow.
- Now that I'm diagnosed, I am going to be so much more enabled in how I manage things.

Sorry for the long post, but it's good to get certain things out when you've been holding them in for so long.

- Dave

 

[KayleighMeek]

Hello and welcome to the forum.

Some of the stories on here can be quite scary especially for people who have just been diagnosed and want to find out more. The thing to remember with Crohn's disease is each person is very different and the severity varies a lot.
Having a chronic illness can be really hard on a relationship have you spoken to your girlfriend about the way you have been feeling?
As for jobs you will be covered under (in the uk, not sure what it would be called in other coutries) the disability discrimination act so if you go for a job they can't discriminate against you for having crohn's, also employers would have to try and come up with reasonable adjustments so you could always have access to a toilet.
It's really tough coming to terms with the diagnosis but one day it will be easier and the medication you have been given should help. The prednisone should help calm down the symptoms quite quickly usually people start to notice a difference within a couple of days. The imuran can take a while longer I believe anywhere up to 3 months but again some see a difference sooner than that. Pentasa doesn't always work for people with Crohn's disease but it does for some. Humira seems scary at first but its in a pen, like an Epi pen, and is really simple to use plus you can't see the needle which does help.
I really hope the meds start working soon for you

 

[Clash]

Just wanted to welcome you to the forum, so sorry to hear of all you have been through.

It does sound like from your description the your CD is not mild, since fistulas are involved but finding the right med can get every thing under control. My son spent alot of time at home in his room before his diagnosis and until the meds started working. Now, he is out and about like a normal teen.

I would allow yourself to grieve and be open with your partner. It takes time to come to terms with the illness and learn the ins and outs of it but hang in there.

As far as the new job, I can understand your trepidation about letting employers know about your illness. In the US we do have the disabilities act as well but I still worry about how my son may be treated if he were to be forthcoming about his illness. I am going to tag Jennifer as she may have some info on how to handle this, at least in the US.

My son is on Remicade which is biologic similar to Humira but is given by IV infusion instead of shot. He was freaked out about shots and IVs in the beginning but now it doesn't bother him at all. There are some tips about the delivery of the Humira shot in our Humira Section(<--click here). I hope you are headed toward remission soon!!

 

[Jennifer]

Hi Mr D. and welcome to the forum!

As for the employment, many members don't mention their illness before they're hired. Its none of their business really what your symptoms are so you shouldn't have to go into too much detail when you do tell them. You could wait until its causing problems or you could inform them right away about your needs. As far as being asked if you do have a disability that could affect your work performance, that I don't have an answer for yet I hope the information below helps.

Feel free to read the Americans with Disabilities Act here: http://www.crohnsforum.com/wiki/Disability-and-Crohns-USA
Snippet from the link above:
For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.

Here's information on the requirements of employers when it comes to employees with disabilities:

(8) Qualified individual

The term "qualified individual " means an individual who, with or without reasonable accommodation, can perform the essential functions of the employment position that such individual holds or desires. For the purposes of this subchapter, consideration shall be given to the employer's judgment as to what functions of a job are essential, and if an employer has prepared a written description before advertising or interviewing applicants for the job, this description shall be considered evidence of the essential functions of the job.

(9) Reasonable accommodation

The term "reasonable accommodation" may include

(A) making existing facilities used by employees readily accessible to and usable by individuals with disabilities; and

(B) job restructuring, part-time or modified work schedules, reassignment to a vacant position, acquisition or modification of equipment or devices, appropriate adjustment or modifications of examinations, training materials or policies, the provision of qualified readers or interpreters, and other similar accommodations for individuals with disabilities.
http://www.ada.gov/pubs/adastatute08.htm#subchapterI

Crohn's disease is covered under the Americans with Disabilities Act so you cannot be discriminated against for your disability. People with Crohn's disease can also receive SSI and/or SSDI through Social Security because it falls under the definition of a disability (see first link above). If you do decide to go on disability through Social Security keep in mind that many people are denied their first time applying so you must appeal. Having a lawyer also helps and they don't get paid until they win your case.

 

[Mr D.]

Hey guys, thanks for the warm welcome and advice.

We have those anti-discrimination laws here in Australia also. The only problem is that if you tell them of an illness before you actually have the job and then don't get the job, it can be hard to tell (and even harder to prove) that that was the reason. I think ultimately it's something I'll have to hide until I'm actually employed. I would prefer to be forthright with it, but sometimes you've gotta do what you've gotta do, I guess.

As for the relationship stuff, it's difficult because she got her citizenship here in Australia by doing a chef's course so she's really into her food. She came from India originally and used to love cooking her Indian food for me. Food used to be something we shared as a passion in some ways, but these days eating is more of an anxiety for me than a passion. I guess it's just another test of the relationship, but we'll see how it goes.

It's weird. I never knew what Crohn's was or how serious it could be until I got it and came on here and started reading people's stories. I've been on the meds 3 days now, and I've noticed that for some reason either the prednisolone or the imuran, one of them, causes me to be extremely sleepy about 30 mins after I've taken them. I don't know if that's normal or if it's just my body adjusting to them.

Anyway, just wanted to say thanks again.
I like this place... think I'll hang around

Cheers!