HELP - Flaring, confused and dissapointed

Hi everyone, could someone / anyone please help me or at least tell me I am not crazy to feel the way I feel....

I have Crohn's, Coloitis and IBS.... During my last hospitalization I was put on Humira and Imuran and it brought my flare under control.  That only lasted 5 months unfortunately and now I am beginning to flare again.  My GI says my next step is surgery with most likely a perm. ileostomy.  I am ok with this.  I just want my life back.  I am a 28y/o female and mother of a 4 year old and I want this disease to stop getting in the way of life!

I am not having a pity party but I was told by my GI and GP that I should not continue with my career (I am a unit clerk at a hospital) since I have a low immune system and the hospitals are germ pits and that it is very dangerous for my to work there and take that risk of contracting something (ex. Norwalk, MRSA, CDiff etc).  I feel like I've wasted money (on school), time, energy etc. and now because of this stupid disease I can't even work at the career I chose.  I do not have more money to go back to school so now what? And on top of that, when I am flaring sometimes the last thing I can think of is to work.  Although, unless I win the lottery the bills will have to be paid.  My husband works and we can get by with his income but sometimes it's tight .What do I do? I want to be the best mom for my daughter (that is my priority) but do I give up my work since I am so sick sometimes and it's not even recommended at this point or just keep going?  Also, what is it like with a bag? Up's and down's? Pro's and Con's?   Sometimes I feel like my whole life has changed since this diagnosis and all these doors are closing...has anyone else felt this? Is it true once you get surgery you will essentially get your life back? Do you usually continue Humira after surgery? I am so sick and tired of being sick and tired!!!!!!!!!!!!!!!!!!!!!!!!

Thank you for listening everyone ... it feels so good to get all that out! :)

I'm so with you about wanting a life back. My next step will also be surgery, probably with a permanent ileostomy, barring a minor miracle. I can't honestly claim to be happy about that, but if it did lead to a long remission then it would be worth it: it's the 'ifs' which kill me, though.

I guess at least one thing I don't have to worry about is work at the moment. I wish I could help on that front, but don't really know what to say. If you did give it up for now, would it be possible to start again after surgery? I think the better thing would be to give it up temporarily, but I do know it's not always easy to get a job again.

I've heard good things from people've had ileostomies. A lot of people have said they've got their life back. At any rate, if you've tried all the Crohn's meds what else is there left to do? You could try enteral nutrition, basically an all-liquid diet for a few weeks. That does get some people into remission, but unfortunately the disease tends to come back once you come off the diet.

Wish I could sound a bit more positive, sorry... :-/ I'm sure surgery will help massively.

Thank you everyone for the replys :) I appreciate all of them!!!!
Kazbern - this is a very good point and why I am confused, when I started Humira last year I asked if it was still ok to continue with my work and they said it's fine, that lots of people take immunosupp's and work in healthcare. But now with Norwalk about to outbreak and I was working on an acute care unit for the elderly my GI said to hold off bc there is so much CDIFF and MRSA up there (which there is). So I followed his direction and gave up my line up there. I am only a casual worker (that's how you have to start off) so I can pick and choose my shifts (it's not Mon-Fri sort of thing) and I just don't know if I am 'ready' to essentially give up on working until this flare is over. I am still relatively new to Crohn's and learning to listen to my body.... Also, does anyone else feel the same for this situation..... when you know you are starting to flare and you just feel like a sitting duck waiting for it to get worse until your GI does something (ex. waiting for it to be bad enough for surgery). Is it me or is this a real downer :( How do you guys deal with this impending situation? My GI is really great but I hate knowing it's going to get worse before it gets better. Thanks!!!!!!!!!!

I had to give it up in 2004..I worked in ERs, doctors offices, and EMS..I went then to being in insurance sales to a claims adjuster..You still pick up things in an office environment to but not like the hospital..My immune system could not tolerate it..You can try changing your diet gluten free and SCD many try successfully..In 2004, I was liquids and baby food..I just walk around with a moon face and heavier now from long term predisone usage..Is there you can do with your training out of the hospital environment at least for now?? I had to work..I did not have a choice..I had four kids, and my husband brought in a lower working class income..