PEG feeding...again, is it worth it?

[Oms]

So after a couple of re-sections', countless pred courses & a previous PEG feeding trial a couple of years ago, I'm back at square one...markers are up & weight is down. Under 50kg over 6' tall

So it's been decided by my specialist to cut me up again, adding to my scar filled mid-section, & put a PEG in...again :ywow: Firstly, one scar was cool - I could blag that it was a shark bite or I was rescuing a damsel, this many scars just looks a bit rubbish.

Now the serious stuff...last time I had the PEG my commute was 15mins each way, now its closer to 2hrs, by car - are there any risks with the PEG & the drive being so long?

I want to tell work but I don't think I will - we've had a few firings & I don't want them to use this as an excuse to call it a day with me..any ideas how to deal with them?

Thankfully, I'm in the UK, ( I really feel for the US Crohn's guys - I don't understand your health care 100%, but without the right insurance it does cost a lot right (sorry if I'm wrong, another discussion for another day)) so I won't be out of pocket much, can anyone in the UK give me any advice on any PEG related benefits - similar to an incapacity benefit but less severe, maybe like a temporary disability card for parking etc - i only ask because one thing i do remember about last time was how difficult long walks were for me

And Finally...yes I've tried the nutrition drinks, they don't work anymore; I'm even less keen on feeding through the nose & too be honest there isn't much left that I haven't tried :frown:

The main concern this time, as it was last time (but I didn't realise it at the time) is that the PEG makes me remember & realise every damn minute of every damn day that I'm not well; flare-up's are one thing, they come & go, but having to remember that I need to be home at a certain time to begin my feed every night; having to remember who I can hug, trying to hide it from almost everyone & the awkward silence when you mention it to anyone. These are the aspects that I hate.

Any advice?

 

[sunflower]

I have no advice whatsoever. I just want to enccourage you to do what you need to do. It is worth it. I am sorry you have to go to such extremes.

I do understand the awkward silences, though. Just mentioning that you have a serious disease turns on the cricket sounds.

I am from the US so after you have been at a job for at least a year, they have a protection from losing your job. It is called FMLA or the Family Medical Leave Act. It protects your job for at least 12 weeks if you have to be off work for serious medical conditions. However, you are on your own if you have to be off more than that. If I get released back to work at the end of August, I will have used 10 of my 12 weeks for the year.

Do you have some sort of legal way to protect your job?? As wonderful as your country is about taking care of people medically, I have to think there is a way to protect your way of making a living.

I have always been honest with my employers about my condition and told them up front what is going on if I am having problems. All my other jobs have been supportive, except my current one. However, you know your employer - it may not be worth it to disclose to them. If you have laws that prevent them from discriminating against you for being ill, it might be the best thing to do. That way they know up front that you are struggling and why. Sometimes it is the why that makes all the difference to people.

Keep in touch!