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Returning to work


I had a stoma formed on 1st August during emergency surgery. My TI was removed because of nasty Crohn's in it and an abscess. My GI and surgeon are hoping to reverse it in the next year (lots of problems with drinking and liquid output leading to dehydration).

I've been off work since April with nasty flares and then the surgery. I really need to go back for financial reasons, but am still having problems with being able to drink- basically, when I drink during the day it runs straight through. Some days needing to empty upwards of 20 times, and am experiencing a lot of nasty joint pain. The medical people think it's too soon and that I'm not well enough, but really don't have a choice.

Does anyone have experiences of going back to work to share? I'm terrified about the stoma making noises in the office and managing emptying and such. My role is actually community based. I'm normally in and out of peoples' homes doing assessments, but I'll be going back to a modified office role until it's been reversed and has settled.
Im much in the same boat.
I too was/am worried finacially, but ive decided that my health comes first. Im on SSP at the moment so you know thats not a lot.
Have a real good think about going back because say you go back too soon, you could end up back in hospital -back to square one.
with regards to our new way of toilet needs, I hope you have an understanding boss like I have, and yeah the noises are very concerning and im.sure im going to be embarrased, but no more than I was about soiling myself.
Im sure there is people on hear that will be able to give their advice on what they did to overcome the back to work fear. I shal be keeping an eye this post too to pick up some tips:wink:
It's such a horrible position to be in, being stuck between taking further risks to our health or suffering financial hardship. It's infuriating. I've worked since I was fifteen, and fifteen years later I need help from the state because of this damned disease and can't get it because I don't qualify. I've been dealing with depression and anxiety for several years and the anxiety is getting out of hand because of the financial situation, but am really not sure I'm fit for work. I went back after eight weeks off in mid-June but was back in hospital after two weeks.

My employers have been wonderful and I'm pleased yours have, too. It's hard enough to live with these challenges without difficult employers thrown in! I'm meeting with my immediate managers tomorrow to see if any 'reasonable adjustments' can be made to get me back in.
I couldnt agree more.
I would be tempted to phone wealthfare rigts see what benefits you mayne entitled to. Im entiteld to SSP for 6 months .
Hope it went well with your managers? Because when all said and done we do still worry about our jobs.
Have you got any advice in regards to your wartery output.
It was very positive with managers. They agreed straight away that I won't need to do home visits for assessments until I have the reversal and am relatively back on track. They have plenty of office based phone assessment work and supporting other colleagues to be done. It has also been agreed, with support from HR, that I can use annual leave to reduce my working week. Between hours bought through salary sacrifice when I recognised that a full week was too much last year, and creative use of annual leave I will have a 30 hour week. They have agreed that I can do three hours in the morning from the office, and then home work the last three hours so I can be at home when I'm having problems with not being able to drink and needing to use the loo constantly. Will also mean that I don't have to drive home between five and six, by which point I'm exhausted and not fit to drive. They really have been wonderful.

However, just to complicate things, I got a call from my GP surgery last Thursday saying the hospital wanted me in for an urgent blood test. Went in on Friday and it was because my previous blood, taken the week before, was showing abnormalities. An IBD nurse rang today and said it's showing that my immune system is very low (I thought this was normal when on Humira!!!) and kidney function still isn't good. Mixed in with rotten joint pain that's showing no sign of abating, I'm concerned that my GP won't sign off on me going back to work, and work won't let me back in unless my GP gives me a fit note, even if it does state adjusted duties and phased return (starting at 16 hours and building up to 30 over four weeks).

Through work I was very fortunate to get 6 months at full pay, and then it's six months of half pay. I've spoken to welfare rights and they've said I can't get any help until that runs out. They did suggest applying for PIP on grounds of the impact the pain is having on my mobility and managing household stuff, and the problems with the constant watery output during the day has on being able to go out and do anything.

I've seen my consultant and surgeon as well as the stoma nurses about the output problems. They basically said some people's bowels don't handle the surgery well and become very sensitive, causing fluid being 'refused'. They seem to think that reconnecting things so fluid hits the large bowel where it should be absorbed will rectify the problem, but that is a way off (only three months post-op). Loperamide does bugger all.

Sorry, that turned into a bit of a rant!

I went back to work today. My GP was reluctant to sign off on me going back, but my argument that being off with nothing to occupy myself, worry about the impact on future employment, and the anxiety about the financial situation being detrimental to my mental health worked. I'm doing 12 hours this week and building up to 30.

It was great to see colleagues again, and wonderful to have my mind occupied by something other than my health (or lack thereof).

Long way to go before I'm back to my normal role (am in no way fit to be in and out of peoples' homes conducting assessments, especially considering that I would not be physically capable of doing the things I ask them to demonstrate!) but think that this is definitely a step in the right direction.
Hi EmmaLou:

Congratulations on going back to work. It sounds like your employers are great. That's such a big part of the way we feel. I was in the middle going back into the workforce (my youngest is now 18) when I landed back in the hospital with small bowel inflammation, again. This time I even went by ambulance; I'd felt ill for months, but didn't realize it was so serious, and haven't felt well enough to start the process again.

Did you find out what was up with your immune system? I have the awful sounding but relatively benign hypogammaglobulinemia. What a mouthful. It just means I have low levels of several types of the antibodies present in our systems but hasn't really ever troubled me.

Thanks, Augusta :)

They really have been fabulous. Don't want to consider how much more difficult it would have been without support from them.

Sorry you've been feeling so poorly :( This disease is a nasty git.

According to the IBD nurses my neutrophil level is very low, which is likely being caused by the Humira. They've advised me to take every reasonable precaution to avoid infection (even to the point of wiping phones and keyboards with anti-septic wipes at work!), which is the same advice I was given when I started the Humira. Have been put on Budesonide and told not to take my next dose of Humira until my GI has decided whether to keep me on it or if I need to try another. I've always had rotten luck with picking up bugs and colds, so not rating my chances of getting through the next few weeks without getting something, especially considering this latest complication!