Ready to go back to 'normal'?

[valleysangel92]

Hey all

I've been wondering for a while now if I'm ready to go back to some sort of 'normal'. Most of my symptoms have improved since my surgery last year, I'm not vomiting anymore, I've put on over a stone in weight (my clothes finally fit! :ylol2: ) and I have more energy. However, I still get stomach pain, which my GI is aware of, but didn't seem too concerned about (I don't think he was really taking in what I was saying last time though), I'm also getting a lot of heartburn, and having issues with my joints. I had an isotope scan last Friday (4 April) which will hopefully provide some answers.

At the moment, I have a sick note from my doctors, which is getting renewed all the time, when the old one runs out, I just phone and they do a new one. This entitles me to Employment Support Allowance (ESA) which helps me pay my phone bill and travel costs for appointments etc. It seems that my doctors will keep doing this until I can convince them that I am ready for work, rather than them telling me I can, so I have no idea how to judge it.

While I am not desperate for money, I hate not working, I spend most days at home with not that much to do, being signed off as sick makes me feel as though I can't go out and do much, since it's taxpayers money, and besides, living in a village means there isn't much to do anyway.

I have a university place for September (I didn't apply, the uni just called and asked if I wanted the place), which I am really hoping I'll be allowed to take up, but I have no savings to help with costs. I also don't want to just go from doing nothing to living on my own and doing 9-5 lectures every day followed by a block of placements which include 12 hour shifts in hospitals. So getting a part time job would be ideal.

How do you guys gage when you're ready to get back to some sort of 'normal' routine? The last thing I want to do is make my health worse again, last time I went to uni, I came out really sick, but I don't want to sit here not getting anywhere either. I know you can't tell me what to do, I'd just like some opinions and experiences. Thankyou .

 

[superzeeman]

After I had my surgery, it took about 8 weeks before I went back part time. I was ready to go. I would think that if you feel good, go back to work. the stress of boredom might effect your health more than going back. Just my 2 cents

 

[DJW]

Hi valleysangel. I'm so glad you're feeling better. When I come through a long period of sickness I start doing things at home that push my energy levels. I'll start getting up earlier, taking longer walks, basically try and become more active in my daily life. If I can pull that off for a month then I will start working part-time. Nothing worse than committing to an employer and needing to quit shortly after starting because I'm sick again. It also looks bad on a resume.

Best wishes - I hope you can get back to work soon. BTW, really happy you have a spot for school in the fall.

 

[theOcean]

I'm glad to hear that you're improving! After my surgery last year, I spent a long time recuperating -- my college was wonderful and gave me extensions and let me work from home for assignments, but since that semester I've been taking a break.

I dove in headfirst to everything once I felt well enough, but in retrospect I don't think that was the best for me mentally or emotionally. Is it possible that you could slowly ease yourself back into routines? Maybe take a reduced courseload when you go back to taking classes, and then see if you can manage a part-time job once you get settled?

 

[valleysangel92]

Hey guys, thanks for the replys

DJW - I totally agree about commitment, that's why it's taken so long for me to get to this point, I'd hate to get a job and then be going 'oh by the way, I need to quit, I can't handle this ' . My resume looks sorry enough as it is.

The ocean - I'm so glad your college has been understanding! Mine have been wonderful too, I actually started there two years ago and had to leave 3 months in and they still gave me places last year and this year. The difficult bit though is that it's a nursing course, very busy and not much scope for doing things slowly. That's why I wanted to try the part time job first, since there are generally plenty of temporary vacancies which offer 2-4 month contracts that would let me see if I can handle daily life.

 

[LeyCrohn]

Valleys - I am in a similar situation as you, maybe a little shorter leave from work/school. I was out of work/college last semester, felt well enough to start part time in November. Then got sick again and had surgery and have been basically at home since. I feel better and am hoping to return to work part time in the next couple weeks and go from there. Hopefully this will go well and can return to school in August. Better to start slow and build up to a full load right? I hope whatever you decide puts you in a healthy/positive direction

 

[valleysangel92]

Hey - I hope this is finally the end of it for you! To be honest, I had surgery last June, and almost went back last September, but the health check wasn't good enough (well duhh). Funnily though, they didn't question how soon it was after surgery, just everything else.

Since then, I've had a lot of other issues pop up, a small flare up of my asthma, my heart doing crazy things (I think it gets bored ), and my joints all deciding to double in size.. so it has been a combination of everything that's kept me from getting a job, and some over protective GPs. Although I'm currently getting abdo pain, which might be a flare, I don't think there's anything the correct medication won't solve. I'm currently not on any maintanence medication, and that doesn't sit well with me, or the uni health team.

Thankyou I hope you can get back to school too!

 

[LeyCrohn]

Oh dang that's a lot of stuff to deal with. I just had continued crohns issues post surgery: inflammation, bad abscess, and chronic D (which just started lomotil and it definitely is slowing things down finally!!). Are you gonna start a maintenance med soon? I.e. remicade, 6mp, or one of the others? And thank you

 

[valleysangel92]

I'm sorry to hear that "/ are you on a good maintenance medication now? I don't know honestly, the GI I mainly see has somehow decided that I don't have crohns, and 'whatever it was won't come back' despite a professor in England saying i DO have crohns, plus my surgeon, plus the IBD specialist (who I only see about once a year) and plus my rheumatologist (who almost had a fit when I said my GI had dismissed it). I have an 'emergency' appointment at my GPs later, although I'm not sure which GP I'll see so can't say how much use it will be. If they help, they may put me on pentasa or steroids while they contact my GI, or send me into hospital. If its useless, I'll have to go back next week. Sometimes I swear I'm a yoyo, not a 21 year old girl :tongue:


Edit - oh and you know how I bragged that my clothes fit? Well, I since weighed myself.. and I've lost weight.. :ybatty:

 

[LeyCrohn]

Yeah I'm on remicade and my small bowel series looked great the surgeon said so seems like it's finally working. One of my surgeons thought I was mis diagnosed and took me off 6mp a few years ago, which I was all for it at the time. But unfortunately that didn't turn out to be true. All I can say is majority rules in your case haha. Have you ever been on one of the immunosupressants? I used to feel the same way when I was first diagnosed when I was 13 and at a research hospital. That GI would literally come in and out of the room during an appointment doing who knows what, like he was working a factory line. I'm 22 and luckily my family has connections so I have really good doctors and surgeons since leaving the research hospital

 

[valleysangel92]

That's great I'm really pleased for you ... No I haven't, only steroids and pentasa, since I'd been undiagnosed for a long time, so had a lot of scar tissue that was causing obstructions, so they decided it was better to just take it out, since that would mean less hospital stays and a better recovery and hopefully stop it spreading... I enquired about post op meds and was told it was a 'wait and see ' thing. My step cousin has severe crohns, and she didn't get medicated properly at first either, now she's fighting to stop her 4 th surgery... Here the bigger drugs are strictly for the worst patients, even immunosuppressive meds take a lot of getting.. The nhs is strapped for funding so they have to be really strict about medications. It's sad really.

 

[LeyCrohn]

It is because immunosuppressants are supposed to help keep the disease from getting worse in the first place

 

[valleysangel92]

I guess here they are concious of needing a go-to if the disease suddenly becomes severe, and to be honest, hospitals here don't always have the resources needed to administer the drug if its an infusion, since budgets for nurses etc have been dramatically cut. Our government isn't looking after the NHS the way it should be.

 

[LeyCrohn]

Sorry to hear that