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08-14-2013, 02:33 PM   #1
tonisturrs
 
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How do people go on with full time work?

Hi there,

I'm a bit concerned at the moment because apparently I'm a glutton for punishment and I'm starting a 40 hour week job on Monday. I've been diagnosed for about 2 months, but ill for about a year.

In the last year I was technically doing full time at University and it damn near killed me - whenever we broke up for the holidays I ended up in hospital - it was like my body was waiting until it new I had the time! At that point I had to be up at 5am, and got home between 2pm-4pm. I'd have my tea and go straight to sleep. With my new job I will have to be up at 5am, and I won't get home until nearly 8pm. I'm honestly terrified.

I'm not feeling much better yet, I've been taking Entocort since diagnosis, but I still have pain and cramps when I eat. I rarely eat, in fact I'm concerned I'm developing a food phobia. When I don't eat I feel unmotivated and listless. When I do eat, I feel weighed down and very lethargic (even with tiny but regular portions). I've honestly forgotten what having energy feels like.

I HAD to get the job as I'm so far into my overdraft (as working whilst at uni wasn't an option due to being so drained all the time) that I can barely even afford to get by. I'm lucky that my Grandparents are letting me live with them, but being an adult living with my Nanna is not doing much for my self esteem.

I just wanted to know how other people with Crohn's get on with working full time? Do you get used to it over time? I never got used to the constant lethargy through out Uni, the tiredness never went away.

I've told my new employer that I have Crohn's but it wasn't mentioned I literally just declared it on a form. They seem like a good company to work for, but they do seem very unappreciative of illness and absences caused by illness. I told them a hospital appointment I have soon and they said "that's fine as long as you tell us in good time, it's when people ring up in the morning and tell us they have an appointment/doctors etc" - this worried me as my flares literally come on within a matter of maybe half an hour. One minute I'll be fine, next I'm double up, and next I'm in hospital.

I'm sure I'm being overly anxious, and I apologise for the huge post, I've just always suffered from social anxiety as it is, now I have all this to consider too!
08-14-2013, 05:45 PM   #2
AuntieEm
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Ommmmmmmmmmmm..... Try not to stress. I know, I know, easier said than done. But it's really really bad for your crohn's. Starting out on your job you are going to have to eat but stick to things that you know for sure don't aggravate your gut, drink plenty of fluids to prevent dehydration and make sure your vitamin levels are good (D, B12, Pottasium, Iron). Get the rest you need and LISTEN to your body!

Talk to your GI about where you are going after the steroids. The entocort is a short term treatment for inflammation. (a steroid) That too should help once you find something that works well for you.

Hugs and best wishes on your new job!
08-14-2013, 05:47 PM   #3
rygon
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I think most places do not want employees ringing up with no notice for routine appointments (my mate decided to say he couldnt work as he had a dentist appointment that morning!). But if you need to see a doctor in an emergency you have to go, and they will be understanding.

you do need to eat though as without nutrients your body cannot repair itself. Have you told your doc as they may be able to prescribe nutritional shakes.

I work 12hr shifts so it can be tiring but I find it easier than constant learning with my degree. I guess you will find out but it is better to step in the unknown and find out, than to sit at home wondering.

Have you looked at your diet btw? A lot of people find wholewheat, seeds, salad, corn etc to cause problems, so a "healthy" diet might not be so good for us.

Theres also looking at your Ferritin, vit D, and B12 levels which can all cause tiredness (I find it hard to stay awake for more than 6hrs when my iron levels are low)

I think this link will help you as well understand what to expect from employers with regards to your IBD http://www.crohnsandcolitis.org.uk/i...and-employment
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08-14-2013, 05:50 PM   #4
AuntieEm
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PS: Is the entocort helping? What dosage are you at?
08-15-2013, 02:21 AM   #5
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Hi AuntyEm, I totally agree, trying not to stress is definitely the biggest challenge, and I know my pains are always worse when I feel tense, so I've been trying relaxing breathing etc to keep calm and reduce my anxiety levels! I do drink plenty of water which I think at the moment is the only thing I do right. I used to drink lots of caffeine but I cut it out because it seemed to be irritating my gut so I'm not getting the energy boost from that - although I stopped 2 months ago, you'd think I'd be used to it by now!

I think they want to put me on azathioprine soon, but I have my GI appointment in three weeks so I'll find out then. I really don't feel that the entocort is working, I've been on it 2 months now and I still get pain, I'm still tired all the time and my joints still hurt a lot. I can't remember the dosage at the moment but I know I was taking 3 pills for the first month, 2 for the second etc.

Rygon I think I've been considering some form of shake/smoothie myself as it's often the weight of food in my stomach, whether large or small, that seems to cause the most problems, so I will speak to my doctor about it. I didn't even think that there might be something they could do with regards to that, duh!

I do keep hoping that it will be easier than with my degree, because of course once I got home I then had the constant stress of work I should be doing, where as at least with this once I get home I can just sleep and now worry about what I have to do! I am very careful with my diet now yeah, I know that a lot of the healthy foods that I used to eat a lot were a part of the culprit, so most of them have been reduced or cut out.

I've had all my bloods done and they said that all of my vitamin levels etc are fine, which in a strange way was frustrating because obviously if my iron levels were low I could take something to boost it a bit!

Thank you for helping, sometimes I think just talking about it helps to reduce the anxiety a bit haha!
08-15-2013, 06:21 AM   #6
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I feel your pain, Toni, as I just switched jobs back on July 1. My old job was 2 miles from my house and I could be there in 5 minutes. My new job is 30 miles away and can take 40 minutes coming in and 90 minutes going home. Talk about anxiety!

Every day is different. Fight the anxiety, don't let it overwhelm you. Take lots of deep breaths. A lot of this disease, to me, is mental. If your mind fails, your body will too. I feel like I go to the bathroom a lot at work, but when I tell people why they honestly don't notice. So be open and honest when you have to be, people seem to understand.

I refuse to let my condition beat me, especially as I try to climb the corporate ladder. Sure, some days are miserable and I feel like I'm never going to get home, or that an accident is inevitable, but things always seem to work out.

I hope that helps. Good luck with the new job!
08-15-2013, 07:27 AM   #7
rygon
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It would be worth asking for your actual levels as I have had them back from the doctors saying they are within limits. When ask what my iron actually was it turned out it was 14 (limit being 12), but normally I'm between 50-60. So although it was still ok in their eyes it was causing my to feel very tired.

I was on fortisip drinks when I came out of hospital to help put my weight back on and get much needed vitamins (I blame the hospital food ) The milkshake ones were really nice, but the juice wasnt too bad either. Juicing vegetables is a reallly good way of getting the nutrition in as well. It normally needs a bit of fruit in but try not too mke too many fruit only juices as its high in sugar.

All else fails I neck a couple of paracetamols and rub some tiger balm on my stomach and that helps dull the pain.

btw Im on aza and it really helped, so hopefully it will do you some good. Im surprised they haven't tried pentasa as that's normally the 1st drug that people try in my experience.

Good luck in your new job, im sure it will take you a few weeks to adjust to the long days (I've never been a morning person so 5am would kill me lol), but hopefully it will be worth it
08-15-2013, 07:47 AM   #8
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Like bbizzowers I try not to let Crohn's beat me. I spent 4 years at uni so that I could do the job I wanted, and I've now been working for 3 years and am doing really well in establishing my career. I've been battling my worst flare for 2 of those last 3 years and there have been times when I've REALLY struggled to go to work but I just force myself through it. Although not all of my colleagues know that I have Crohn's, they all know there is something wrong with me as I've been hospitalised twice in the last two years. They've all been really nice about it, you'll probably find that most people are genuinely concerned if they find out you're unwell. I find my boss difficult to talk to in person but he has been great about letting me take time off for appointments, and I find it easier to email him which he is ok with. I think so long as you give enough notice of appointments you should be ok. It's in your employers best interests for you to be well, so they should support you by letting you attend appointments where necessary. Obviously you can do your part too by trying to arrange appointments outside of work hours, or at the start or end of the day to minimise the amount of time you need to take off.

I get up at 6am, get ready, go to work. I usually get home around 5pm so it's not as long as your day. I'm often knackered by the time I get home but as you say you don't have to think about doing any studying in the evenings or at weekends, so you can use that time to rest and relax. I find it much less stressful compared to when I was at uni, exams used to guarantee a flare up for me due to the high levels of stress but I find that now I'm working my stress levels are much lower overall and are generally fairly constant throughout the year.

I won't lie, holding down a full time job whilst flaring isn't easy at all but sometimes you just have to push through it. I recently had to take 6 weeks off work due to being hit by a lorry whilst I was in my car and I got so depressed being stuck at home. It was during that time that I realised just how important going out to work is for my mental health, even if it is difficult physically. It keeps me going and gives me something to strive towards. I hope you'll find the same thing. Best of luck on Monday, let us all know how you get on.

Sarah
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


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08-15-2013, 09:25 AM   #9
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Hi tonisturrs,

I definitely understand your concern.. I was worried when i started my new job, but as long as i get to bed early enough i have no problems with it. I found uni much more difficult as tests/exams and all the projects kind of took over my sleep time. I work 40 hrs a week now, getting up at 6 for a 1hr bus ride to (and from) work. I get home at about 5:15 pm. I try to sleep on the bus both ways, and find myself with a bit more energy when i get home.

I too am on entocort (2 capsules in the AM) and am curious if they are making me more tired, i just had blood work done and my vitamin levels seem to be ok. As Rygon said though, juice is wonderful. I got myself a juicer and i try to make something every morning now. Easy to digest and full of energy! I can now generally get a way with 1 coffee after lunch ( I looked up what i was drinking and found a less acidic blend and it seemed to help).


I guess for me, i was comforted when my boss told me to just take all the time i needed for doc. appointments and to let him know if i was feeling un-well. I generally try and work through it if i am getting major cramps. Hopefully your boss will understand what you have to deal with. Just knowing it's not a big deal to miss a few hours of work goes a long way to keeping my stress levels down.

Oh, and i must stress having a good sleep schedule, and try to space out your nightly activities (Ie don't do groceries, play tennis and clean your house in one night)! I generally focus on making dinner and the next day's lunch after work, watch some TV or read a book and then i get to bed pretty much - unless it's grocery day. Once you get used to the full work hours it's not too bad, you just need to find a schedule that works for you and don't skip out on breakfast ever!
08-15-2013, 02:48 PM   #10
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Also meant to say Peppermint tea is great for cramps, I now drink it instead of regular tea and coffee
08-15-2013, 03:09 PM   #11
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Bbizzowers I think you're right. I've often felt like I refuse to let it beat me, and on most days I think I'm fairly good, but there's also days when I physically can't move or get out of bed and that's what I'm scared of. I think if I could accept that it's just a job and if I'm not upto it or they're not compassionate about my illness there will always be something out there for me it would go a long way to easing my anxiety.

Rygon I do agree that they sometimes go by what's "normal" to dictate whether you're okay or not, but I don't know what my iron levels are like usually to indicate whether they're much lower than usual. But I do remember them saying "Oh your inflammation levels are low which means your Crohn's isn't really affecting you at the moment" - Oh reeeeally is it not?! Would you like to try spending all day on the toilet in agony and tell me whether it's affecting me or not? I'll definitely be trying some smoothies etc to see if that could give me the energy boost I need without sitting uncomfortably on my tummy.

Sarah I'm sorry to hear you were hit by a lorry, oh my god! That is some unbelievably terrible luck!! I only had Crohn's through my last year of Uni so I think in many ways I'm lucky, I fought through it because I'm so not a quitter, but I don't think I could have taken three years of it like this. Well done on managing that, that really is quite amazing and shows that you have a lot of strength! I hope my work will be understanding, and I'm sure once I've been there a little while they will be, I suppose it's just the thought of making a bad impression from the outset is a little nervewracking!

Asbestos, I also wonder sometimes whether entocort is making me more tired! Do they seem to helping you? I think it's worrying because my current boss is very very compassionate, there's someone else within the business who has Crohn's and is very ill with it, and they're really understand that he can't help it and do everything they can to help him, but I couldn't get enough hours to support myself there so I had to move elsewhere. I just hope my new boss will be just as understanding! :/ I think you're right, once I'm used to it it will get easier, and hopefully once I have my gastro appointment they might be able to help me get onto something that will help me get better.

Just to make matters worse I had an awful turn today where I started feeling really faint and was bleeding quite a lot. I always seem to end up in hospital when I'm nervous or excited, so I was terrified it was gonna put me back there, but it seems to have eased a little now!!

Thank you soo much for all your responses, this forum really does help so much. It's quite hard to talk to people who don't understand about stuff like this, so it's nice to know there's people out there who get it! xx
08-15-2013, 03:39 PM   #12
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Sarah I'm sorry to hear you were hit by a lorry, oh my god! That is some unbelievably terrible luck!! I only had Crohn's through my last year of Uni so I think in many ways I'm lucky, I fought through it because I'm so not a quitter, but I don't think I could have taken three years of it like this. Well done on managing that, that really is quite amazing and shows that you have a lot of strength! I hope my work will be understanding, and I'm sure once I've been there a little while they will be, I suppose it's just the thought of making a bad impression from the outset is a little nervewracking!
I've had terrible luck this year, I was signed off work for a week because of dangerously low potassium levels (caused by pred), then the day before I was due to return to work I was heading to my GP surgery for a blood test to check on my potassium levels again, feeling so much better and pleased that I'd probably be allowed to go back to work, when I was hit by the lorry. He lost control of his trailer on a bend in the road because he was driving too fast, the trailer swung across into my lane and I had nowhere to go. It pushed me onto a steep grass verge at the side of the road, wrote off my car and has given really bad whiplash which I'm still suffering with 5 months on. My life seemed like an over-dramatised soap for a while! I was really lucky not to be seriously injured or worse but the whiplash is so bad at times that I sometimes wish it had finished me off then and there. I seem to be on the mend slowly but it's still a constant struggle every day.

If you've managed one year of uni with Crohn's, especially the final year which tends to be the most stressful, then it puts you in good standing. It's good to push yourself if you can, but you should also take a step back sometimes and listen to your body (I'm being a hypocrite here because I rarely take my own advice!). I try to remind myself that my health is more important than my job, and sometimes 1 day off is all you need to get yourself up and running again.

I'd also say, be careful who you tell about your Crohn's. I told someone who I thought I could trust, and then in joining her at lunchtime I discovered that she had told two other people without even asking me or being discreet about it. One of these other people then went on to tell me about someone she knew who had really bad Crohn's and had to have a stoma, which for me was hard to listen to as I'd only recently been diagnosed with Crohns (previously we thought it was UC) and I'd been through quite a difficult few months. I learnt my lesson which is why only three of my colleagues know what is wrong with me. I've only had the one bad experience thankfully, everyone else has been really considerate and understanding even if they don't know the name of my illness. I know it really is luck of the draw whether you end up with nice colleagues but I reckon most people are pretty reasonable.

Is there anything you can do to help calm your nerves over the next few days? Camomile tea? Lavender oil in a bath? Yoga or meditation? Stress and Crohn's don't mix very well as you've probably realised by now. Hopefully you can hold out until Monday and then you can relax a little bit once you know what to expect. Deep breaths xx
08-16-2013, 03:09 AM   #13
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That's so awful, and sounds absolutely terrifying! I've only been in one car accident and that was minor compared to yours and that put me off being in a car for months, I can only begin to imagine how terrible that is! I always seem to very unlucky and I sometimes wonder what I must have done! People usually say "you make your own luck!" but I was really positive, but eventually it gets more difficult to find silver linings in rubbish situations! I hope things start looking up for you soon, you sound like you've been to hell and back recently.

I think that's very good advice, only my friends know, and I don't really tell people unless it becomes necessary. I found out the hard way how little people who don't have it seem to understand why you wouldn't want everyone and their dog to know - a woman who was in the opposite bed to me in hospital heard the nurses tell me I needed to have a suppository, she then proceeded to tell everyone she spoke to that I'd had to have one because she thought it was funny!

I have started trying to do some yoga on a morning because I find it sets up my day quite nicely and makes me relax. I'm trying to practice breathing exercises when I get worked up because I'm prone to panic attacks. After one of those my stomach is agony for the whole day, I think it must stay tensed up or something! I'm sure I'll be fine, I'm very good at panicking over something and nothing! xx
08-16-2013, 03:47 AM   #14
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I don't work full time. I do work part time though. However, I'm probably not the best one for an example because even when I've been at my worst I've refused to call in.

My cousin has crohn's and is a teacher along with working full time. She's always running even when not at work with her family. I don't know how she does it. But, I do know that she doesn't let her crohn's tie her down.

My new manager doesn't know about my Ulcerative Proctitis and has been my manager for probably a couple months. I've wanted him to know me for my work and not me being sick. Plus, there's a couple of girls in my department who've signed up for some sort of thing where they can't get rid of you because of dialing in too much. I know that rubbed my management the wrong way. Eventually my manager will know when it's necessary. But, till then there's no need. I hope all goes well with your new job! Sending hugs your way.
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08-16-2013, 04:00 AM   #15
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If I could afford to live off a part-time wage I would do because I think it would be so much better for me health wise, and maybe when I'm in a better financial situation if I'm still struggling with illness I'll consider it then. I've never understood how people manage to work crazy hours, even when I was well! I've always struggled with feeling lethargic, even when I was in school, I'd come home and go to straight to bed after my tea.

I've not really thought of it in those terms, but I didn't want to tell people because I didn't want them to judge me because of it, so yeah I really know what you mean not wanting them to know you because you're sick. I think as long as I work really hard when I'm well enough to do so they can't penalize me on the occasions when I am feeling really terrible.
08-16-2013, 04:06 AM   #16
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Just do your best. That's all anyone can expect you to do. I have to admit that I work some strange hours myself. I work in a department grocery store in the apparel department. It's a bit crazy right now between summer vacation and kids/parents getting ready for back to school. Each day I describe my work as a zoo!
08-21-2013, 12:40 PM   #17
raj
 
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Just wanted to wish you luck. I work construction. The long hours get pretty difficult but fortunately I'm the crane operator so the crane does most of my work for me. I make juice every morning and only eat once I'm home. Not the best way to live but we do what we have to. Good luck.
08-24-2013, 07:48 AM   #18
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Ommmmmmmmmmmm..... Try not to stress. I know, I know, easier said than done. But it's really really bad for your crohn's. Starting out on your job you are going to have to eat but stick to things that you know for sure don't aggravate your gut, drink plenty of fluids to prevent dehydration and make sure your vitamin levels are good (D, B12, Pottasium, Iron). Get the rest you need and LISTEN to your body!

Talk to your GI about where you are going after the steroids. The entocort is a short term treatment for inflammation. (a steroid) That too should help once you find something that works well for you.

Hugs and best wishes on your new job!
This is what I do I watch what I eat or drink at work and I'm using the clear fruity flavored ensure drinks at work to help supplement. Its doable. I've even taken my heating pad to work of course this would all depend on your employment and employer.
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rectum removed and closed up.
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08-24-2013, 08:12 AM   #19
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As it happens the job was awful, on my first day the manager went into a long lecture about how he had cancer and believes anyone "who tries to use illness as an excuse to not come into work, or for bad performance is lying". It turned out to be a horrible cold calling role in which I was required to repeatedly pester people who had specifically asked not to be contacted. I knew there was no way I could continue with a role like that, it made me feel sick every time I had to pick the phone up. So I'm back to square one, but at least I can concentrate on getting better I suppose! Thank you for all your advice
08-24-2013, 09:36 AM   #20
SarahD
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Ugh, that doesn't sound much fun Are you going to continue looking for another job or just concentrate on getting better?
08-24-2013, 10:58 AM   #21
AuntieEm
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I agree, not the job for you. Find a career direction you enjoy. Then you will be able to find an area in it that works for you and the tools necc. to manage your crohns regardless of remission or not. Hang in there. Work on getting better and checking out options you might surprise yourself. Keep busy if you can. It helps.
08-24-2013, 12:03 PM   #22
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It definitely wasn't pleasant, but I will keep looking for a job, however I'm going to be a little smarter and only look for part time, and not let job hunting stress me out too much. I think I took the job because I was feeling a little bit of pressure from the people around me, who seem to think that working full time is the only honourable way of life. I am trying to stop worrying about others opinions of me, and focus on what is right for me and my health.
08-24-2013, 02:02 PM   #23
SarahD
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If I could afford to work part time and my boss would let me then I would, definitely. There's no shame in working part time, try not to worry what other people think and do what's right for you x
08-24-2013, 02:30 PM   #24
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Hi Tonisturs

I was in the same position as you regarding the work, i was newly diagonosed and got a 40 hour a week job literally days after my diagnosis. i was so worried that i wouldnt even last the day because i felt so ill.

That was 8 years ago and im still in the same job.

Dont get me wrong, i do have the odd week off now and again, i think last year i had 2 weeks sickness which isnt alot considering i have crohns/colitis.

The encouragement i can give you from personal experience is that your body will adjust to your new work and the times you start and finnish etc, it doesnt take long to train the body and you will be astonished how fast it does. I find now that my symptoms get worse at weekends or when im off on holiday, in work its completely fine. I was shocked.

The advice i will give you is.. dont worry or stress yourself because that will only make it worse, just go in with the attitude "if it doesnt work out then it doesnt work out" dont put added pressure on yourself, just relax and completely go with the flow. Also try not to starve yourself because that can actually make symptoms worse. A consultant once told me that with IBD its best to keep your bowls working, try have small portions every 2 hours and keep them ticking over. I followed that instruction and i started to get my energy back.

I do genuinly wish you all the best and i bet your worrying for nothing, alot of the issues connected to this disease is in the head, if you try not to put pressure on yourself and just relax and take things as they come, it will help you.

Best of luck

Nicky
08-24-2013, 04:22 PM   #25
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What Danico says is true. When you haven't worked in awhile it'll take a bit for your body to get used to the new routine. But, once you've worked for a bit and you've got that routine of eating, sleeping, etc it'll be easier.

We notice that when we take our vacations we get hungry about the times that we usually have our lunch at work. During these times it's sometimes hard to break our regular routines of when we're working.
08-25-2013, 03:23 AM   #26
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Yeah Sarah obviously that is a consideration, I'm very lucky to live with my Grandparents at the moment, so my outgoings are very low, but my debts are very big after uni. Really I think I'll try and do part time until I'm in a better place financially, and hopefully by that point my health will be much better and I'll be able to look for full time!
08-25-2013, 04:32 AM   #27
alex_chris
Senior Member
 
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Join Date: Apr 2013
Location: Frankfurt, Germany
Yeah Sarah obviously that is a consideration, I'm very lucky to live with my Grandparents at the moment, so my outgoings are very low, but my debts are very big after uni. Really I think I'll try and do part time until I'm in a better place financially, and hopefully by that point my health will be much better and I'll be able to look for full time!
That is definitely an option. Have you looked into graduate degrees as well? I always think that to findthe job you want and the job you can easily do full time with Crohn's, you need to know what you want to do and then pursue a path thT leads there. Maybe that's just fluff talk but I have seen many people who like their jobs who got them because they thought long and hard what they wanted to do and then started to work towards that direction.
__________________
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Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
08-25-2013, 05:56 AM   #28
Myles
 
Join Date: Aug 2013
Tonisturrs

I put myself through Uni, many years ago, before the current loan system, by working at Tesco. Completing my sandwiches degree, proved very difficult with Crohn's, but eventually after several hospital admissions, I got there.

I returned to work with the Employer whom I had worked with in my year out, and then completed my Professional registration as a Chartered Surveyor. I had managed only by sleeping in my car at lunchtimes, hiding the illness the best I could!

I had been working only a year before I needed a liver transplant, PSC, believed to be related to Crohn's disease, (but thankfully only a tiny proportion of Crohn's suffers need one,so don't stress about that).

My girlfriend of 6.5 years left me after hearing that I could be 'ill' throughout my life.

Whilst on the transplant list, I was introduced to a friend's wife's friend. As I was extremely ill, I certainly wasn't looking for a relationship, but we went out a couple of times and enjoyed each others company.

I had bought a house in a semi derelict condition believing I could renovate it, and when on steroids, I was like superman, wiring, plumbing, tiling, the whole lot, but it certainly wasn't complete before I got the call that a donor was found.

Alexis insisted she come to Birmingham, at this time we had only been seeing each other for 5 weeks, and she had met mum and dad just the once.

After the op they allowed mum and dad into intensive care, 2 per bed rule, despite Alexis having sat outside theatre for all 8 hrs most alone, as mum and dad had to travel from the Lakes.

After the op, they keep you heavily sedated, but mum thought Alexis needed to see me, as she had shown how much she cared, despite only a short period of dating. On hearing Alexis voice, I immediately came lucid, removing a breathing and feeding tube myself, due to the frustration of not being able to speak.

Shortly after, I garbled 'I love you', the doctors administered more anaesthetics.

We got engaged whilst still in hospital, after only 9 weeks together.

We are still married, rapidly approaching 18 years, have a daughter 16, and two boys 11 & 10.

I have had Crohn's since 16, yes, it has affected me, however, I worked solidly for 5 years almost while in remission. Some people only ever have one bout. Others are unfortunate. I am aware one of Britain's bank have a Crohn's suffer on the board, and that means some can work, others will not.

Don't let the Crohn's define you!

We are fortunate that we have a benefits system that will take care of the sick, (and the not sick too). The DWP are aware of how debilitating Crohn's can be, so if you cannot work make sure you speak to the benefits adviser.

We also had the Disability Discrimination Act, so if you feel that you are not progressing with an employer, as your illness is viewed as issue, or your attendance record has been affect, use this make yourself heard.

26 years with Crohn's, it is an issue, you have to believe you can continue. You have to find out works for you. I can't have tomatoes, or anything with small seeds. No alcohol, some say smoking helps, but I'm not will to take that one on!!

I have been on and off so many drugs, but the ones which helped me most in enabling to work, are strong painkillers, tramadol, or Imodium. Both slow the action of the gut down, allowing water to be adsorbed, and giving you time to heal.

These are not standard issue first response medication, it was only after fracturing my hip that I discovered the benefits of strong painkillers on Crohn's. But be careful ask for low strength copoximol, or Imodium and build up to an effective dose. Too much, and you will end up constipated, which can be awful painful with Crohn's.

You can get Imodium over the counter, but most Dr will prescribe it if you find it helps.

I eventually started working for myself, as the transplant and joints became a bigger issue.

I retrained as an Financial Adviser, working from home and visiting clients mainly in the evening, which was the optimum time of day for my condition. Especially as the joints meant I could no longer complete the tasks of a Chartered Surveyor.

I hope that helps a little. Just try not to stress, my wife and father believe what will be will be, and it is just how you handle yourself that matters!
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