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Crohn's Disease Forum » Support Forum » Vent Away » I don't want Crohn's anymore


05-26-2013, 11:17 AM   #1
xxjemmamxx
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I don't want Crohn's anymore

I am so fed up and sick of having this.

I feel like I am about to walk out of work any day now, I just can't take it anymore, I can't cope. No one wants to help me. They've had a letter from my nurse for about a week now explaining that I am really struggling and please can I be moved to another department where I can manage, and they've done nothing. Meanwhile, I am still doing my job, struggling, and hating every minute of it.

And if one more person says to me 'but you look well' then I think I might have to drop kick them in the head Really wound me up when I tried explaining how tired I feel to my nan and she called me 'lazy' when she came in to see me at work this morning. Yes, that's why I feel exhausted and like I am going to pass out, because I am lazy

Sorry I just want to rant. My life was so much better before Crohn's came along. It's ruined a lot of things for me, but mainly my job. Having one of those days where it's hard to look on the bright side and I just want to feel sorry for myself or crawl in a hole and stay there.
05-26-2013, 11:40 AM   #2
Chad K
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I know what you mean, I get the same way. Crohn's has affected me in a lot of ways and I don't have the energy that I used to. I've been on several medications and been in the hospital several times. I even had a couple surgeries and a colostomy bag for a while. It sucks. I don't want it either, and I'm sure no one on this forum does. The people at your work don't seem like they care. They need to understand how painful and draining this disease is. I'm pretty sure you can have your doctor sign some sort of form or something to give to your work about this, or you might want to talk to your HR department. Despite what you are going through you're trying to work, just like myself, and it aint easy at all with this disease. Some days are better than others, but some days just plain suck. Sometimes I can't take it and I want to quit, but then there goes my income and health insurance

Best of luck to you!

Chad
05-26-2013, 11:45 AM   #3
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Vent away babe. I'm feeling that way today too. I woke up feeling so drained today, I had to pick myself to take the kids out for the day, that's used the last of my energy and I'm now feeling emotional cos all I wanna do is go to bed. My partner should b here helping me but has decided to go out. Y don't they get it? I'm sure he thinks I'm being a drama queen....
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05-26-2013, 12:29 PM   #4
Trish22
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Yes, I know exactly how you feel xxjemmamxx,I went to the Drs they gave me a note for work to reduce my hours,they were ok about it,but each week when I picked my itinerary up for my community calls they had put the normal hours I should work,not the deduced hours,which annoyed me.yOu can also get in touch with an occupational therapist and explain to them your illness and what ou can and cannot do,Also you are covered by the D.D.A,so make them sit up and listen.Bestof luck,hope up get something sorted,this illness really sucks,I am having surgery again in two weeks time,this will be my fourth crohns op.
Makes you wonder how much our bodies can put up with,But I will certainly be reducing my hours when I go back to work. Xxxxxx
05-26-2013, 12:41 PM   #5
Hope345
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People truly do not understand this disease at all.
I am sorry you are feeling so sick and having to deal with all of this.

Right now you are your only advocate. You have so many friends and supporters on here, but for your work, I agree, talk with human resources and bring a note from your doctor if you need to.

When you are feeling sick, the last thing you want to do is have to go to work and defend yourself when you are doing the absolute best that you can. You are drained and your body is tired.

Im sure many more people will chime in on how to handle this situation.
It would be nice to have a somewhat standard letter that IBDers could use when they are flaring to give to their work.

I know this seems like a strange illustration but when Crohnies are in a flare it is like a person with cancer while they are on chemotherapy. Everyone understands and sympathizes with what they are going through no questions asked.

I hope your employers work with you so you can take time off when needed and have a less demanding position.

Julie (mom of a daughter with Crohns)
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
05-26-2013, 12:47 PM   #6
xxjemmamxx
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Thanks everyone, it's nice to know that I'm not the only one feeling like this because it does feel lonely at times and frustrating trying to get people to understand the illness and take you seriously. I don't bother anymore, I dread it every time someone asks me about it.

I would consider leaving but I have always worked and I need the money - I just need the right job that works with my Crohn's and with people that are understanding, but I'm not sure that job exists. I am going to try and approach the subject again at work tomorrow and then if that fails I might look into getting a doctors note. I'm very nervous about doing this, I get the impression that they think I'm exaggerating and will probably make me feel guilty for leaving them short if I moved. I wish they could step into my shoes and feel how I feel so I wouldn't have the difficulty of trying to explain it to them.

Hopefully tomorrow will be better than today. Need to get myself to a point where I'm not thinking about my disease all the time and it's not making me unhappy.
05-26-2013, 01:07 PM   #7
Hope345
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Just remember you have NOTHING to feel guilty about. You have an incurable disease and you are doing far more than most people could do.

You sound like a very responsible person like so many on here. You did not ask for this disease, no one does. But you are going to set the path for yourself (and possibly others) who need/want to work.

The main step is to get you into remission. What meds are you on? Are you getting all the vitamins/iron etc that you need?
05-26-2013, 03:22 PM   #8
nogutsnoglory
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I totally feel what you are going through. It's so hard to do simple tasks that others don't think twice about. I can't stand when people tell me I look healthy. So much of this is an invisible disease, if they were in my skin they would feel like a walking dead man. It's very frustrating but know that all of us here can relate to and support you in your ongoing fight.
05-26-2013, 03:24 PM   #9
xxjemmamxx
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Thanks Hope. I need to listen to what you're saying, it's hard to not feel like a burden sometimes. I need to think more like you do!

I was only diagnosed last November/December so I'm still finding it hard to come to terms with that I'm going to have this for the rest of my life. It's still not completely under control but I have a good nurse who is on top of my vitamin levels (recently found out I'm anaemic and I can't absorb b12 due to surgery as well) and is helping to find the right medication (still need to give mine time). I'm optimistic that eventually I will have the disease well under control, but at the minute I'm finding it hard.

Thank you for your kind words, I hope that your daughter is doing well with her illness.
05-26-2013, 03:26 PM   #10
xxjemmamxx
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Thank you every one for taking the time to reply. Whether you realize it or not, you have really helped me and made me feel a lot better already. Especially when you all have your own battles to fight, I appreciate it.
05-26-2013, 04:29 PM   #11
Hope345
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Jemma,

thank you for asking and I am glad to help.
After over a year 1/2 of being diagnosed with mod/severe crohns colitis, my daughter is currently symptom free. We had to pull her out of school finally before Christmas, but now she will go back starting 9th grade and she made the dance team. She spent several months in bed with severe pain and bleeding and when we finally doubled her 7th Remicade infusion, she became symptom free. She had to continue using the Cortifoam for a few months bu now she doesnt even need that.... it is a true miracle Her 9th Remicade is this Friday, she takes her Asacol, vitamins, calcium, iron and probiotic. She eats anything and everything. (except popcorn, the husks are not good for IBDers)

You will find the meds that work for your body. Just be kind to yourself and find a low key hobby that might help keep your mind off of it for a while.
05-26-2013, 04:35 PM   #12
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Vent away OT does suck and if u need any help with work I am an OT and have Crohns so can easily liaise with ur work if u need it

2
05-26-2013, 05:19 PM   #13
xxjemmamxx
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Your poor daughter has really been through the mill with this. I can't imagine how difficult it must have been for you as well, as her parent. She is very lucky to have you as it's clear that you are very supportive. It's great that she's able to enjoy a full diet as well.

Thanks ditsy, that's very kind of you to offer that. Very interesting job to have as well (I have a Bsc Psychology)
05-26-2013, 06:28 PM   #14
DougUte
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Jemman, complain away. We get it here. I am exhausted right now.I am just thankful my wife understands.
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05-26-2013, 11:02 PM   #15
tots
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I get it!

I feel bad you are getting a hard time at work over this.

I hope things slow down soon and you can find that place they call
remission.

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
05-27-2013, 08:33 AM   #16
Beach
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Thanks everyone, it's nice to know that I'm not the only one feeling like this because it does feel lonely at times and frustrating trying to get people to understand the illness and take you seriously. I don't bother anymore, I dread it every time someone asks me about it.

I would consider leaving but I have always worked and I need the money - I just need the right job that works with my Crohn's and with people that are understanding, but I'm not sure that job exists. I am going to try and approach the subject again at work tomorrow and then if that fails I might look into getting a doctors note. I'm very nervous about doing this, I get the impression that they think I'm exaggerating and will probably make me feel guilty for leaving them short if I moved. I wish they could step into my shoes and feel how I feel so I wouldn't have the difficulty of trying to explain it to them.

Hopefully tomorrow will be better than today. Need to get myself to a point where I'm not thinking about my disease all the time and it's not making me unhappy.
To cope with my IBD, and often lack of understanding from others, I joke around. Not that I'm terribly funny, but it's likely something I inherited from my father. Dad and others on that side of the family are quick witted, frequently joking with each other. If there is a humor gene, for better or worse, seems I picked it up from that side of the family.

For some time I've joked that I wish there was an IBD vacation machine. If only I could give my disease to others for awhile, so i could have a break for a week or two. Let them deal with the disease, I need time off! In some respects not a pleasant thought, since this is such a terrible disease. Then again there is an "obesity epidemic" in western society. Maybe a magical IBD vacation machine could make a dent in making others thinner.

I can see it now, I take a vacation for a few weeks, giving the IBD to someone else to deal with. Once the vacation is over, the other person talking to a friend describing his ordeal. He tells how terribly ill he was, always running to the rest room, in pain, scared, tired, no one understood what he was going through!, even goes to the emergency room where doctors stick a thumb sized hose up his rear, only later telling him take Imodium - but now that the stomach flu is gone how happy he is to loose so much weight! He's looking great!

I was at a movie theater the other night with a nephew. He is at the age where kids can be cruel. He's apparently to young to know it isn't polite to point at overweight people and gawk. There were a good number of people being pointed at. I felt bad for many of them, in particular two younger guys sadly so large they needed canes to help them move around.

My nephew believed the overweight people were is need of my IBD vacation machine.

Hope you get everything sorted out at work. It's such a terrible disease, not only physically but mentally too.
05-27-2013, 09:45 AM   #17
Traumanurse
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Oh Jemma, I feel so bad for you! I think all of us have felt that exact things at one time or another. I actually remember one time I was in the hospital for a bad flare. I heard my fellow nurses and co-workers talking about how much pain medications I was taking. It hurt really bad at the time. I also heard my doctor tell them "Go take a look at her X-Rays and the tortuous bowel, and maybe you will understand".

I ended up having to find another job. I just couldn't take the 12-hour shifts any more. Not sure any of my co-workers ever really understood. I was so lucky to find a job I could do when I felt well at home on my own computer. Sometimes I worked from midnight to 2:00am. Just depended on my energy level or when I was in the bathroom. I wish everyone with the horrid disease could find that kind of job.

Teleconferencing and electronic communication has really given us other options for working. I think some companies have come a long way toward accomodating this. Any way you could look into that?

I wish you the best!
05-27-2013, 09:56 AM   #18
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Hang in there
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05-27-2013, 10:54 AM   #19
purdueCrohns
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I'll repeat my quote that I've used a few times on this board. Follow the ways of Barney Stenson from How I Met Your Mother:
"When I get sad, I stop being sad and be awesome instead" It's a good motto to live by.

I know Crohn's can be crappy, pun intended; however, the moment you let it control your life is the moment you lose.

Perhaps you can try to get a work at home agreement at work. That has been helpful when I've been feeling crappy, pun intended. Does the UK have anything like FMLA? In the US, we have that to protect us from getting fired for our illness as long as we miss no more than 12 weeks in a year.
05-27-2013, 11:29 AM   #20
If*
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I hear you! I think we all pretty much can't stand this flipping CD! I spent the morning out yesterday seeing many I would normally work with. (I had taken the day off) My job can be brutal - 14/16 hour days with the public. Something I am not in the position to do right now. I lost 6lbs last week sending me back down to 100 lbs, thanks CD! However I had so many tell me how good I look when I felt like I was going to fall over. I had been exhausted, totally ill back to 20 bathroom visits. I just can't even respond anymore when 'they' ask how I am. Especially since they all start off with how great I am looking. I am starting to wonder if they just don't want to tell me I look like death! I know, you are wondering if I felt so bad, then what was I doing out. Well as many of you already know most of us push ourselves to be 'normal' and are really over achievers! We tend to do more than healthy people even when we feel like crap. If I waited to feel great I would never do anything! Plus I know how bad this can get leaving me laid flat - so it's a do all you can when/while you can.
Beach, your IBD vacation post made me laugh. Especially since I have heard SO many times 'I wish I had what you do" from people who are overweight. It leaves me speechless.
Trying to explain the misery of this CD is a waste of time, if they don't have it they won't understand.
ITA with tramanurse & purdue, the work from home could be awesome! This forum is awesome! It really lets you know you are so not alone. Sorry if I have blithered on in you vent!

Hope you feel a bit better!

Last edited by If*; 05-27-2013 at 02:17 PM. Reason: left some text out?
05-27-2013, 11:33 AM   #21
purdueCrohns
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If you're losing weight, try to see if you can get some boost. That helped me stop losing weight when I was really sick.

http://www.boost.com/nutritional-drinks

My doctor studied them and those seem to absorb the fastest for when our GI track is like a rocket engine.
05-27-2013, 11:37 AM   #22
purdueCrohns
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I'm not sure where your skill sets lie, but I find a career in engineering to be very flexible.
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