To tell work about potential Crohn's disease/ulcerative colitis

[januarybluess]

TMI warning.

I'm waiting for an urgent referral for a colonoscopy, but due to waiting lists it's looking like it's going to take 6+ months.

I get flare ups of symptoms, at my worst I nearly fainted and was passing blood every 30 minutes. I was nearly hospitalised but it only lasted a few days. I've had two of these flare ups so far, a few months apart. In between these, I'm largely ok but get an upset stomach when I'm stressed.

I work from home 4 days a week, and go into the office once a week (we have no rules for how often we're expected to go in). I have a few in-person meetings coming up that are 2 hours away on the train. I also may have some travelling to do for work (meetings in Europe).

I've started developing anxiety when leaving the house as I'm terrified of getting a flare up of symptoms when I'm out and passing out on the floor of a public loo. I don't have any obvious triggers.

My GP thinks it is IBD (Crohn's or ulcerative colitis).

Do I need to just get on with things or should I speak to my manager about it?

Do you have occupational health at work? If you have you can ask to speak to them and describe your symptoms confidentially. Then they can advise your manager what restrictions you need eg no travel for six months. That way your illness is kept private from your immediate work colleagues.

I have Crohn’s. I wouldn’t hide it from my work - any work.
If you’re going to do so, you’ll probably end up stressed as fuck every time you have a flare that occasions an absence - stress is not good for IBD.
Absolutely second having a look at Crohn’s & Colitis UK website - they’re an absolutely brilliant organisation.

For a previous poster, we're talking IBD here aren't we, not IBS? Two completely different medical issues and IBD does warrant immediate attention.

I have Crohn's & also had a 5 month waiting list to even speak to a gastroenterologist. I ended up paying privately so I got diagnosis and treatment within 2 weeks as I was losing weight rapidly, anaemic, and malnourished. I transferred back to NHS once I was diagnosed. There's still long waiting lists for ongoing investigations etc though once you are diagnosed.

Please don’t confused IBS and IBD - they are completely different conditions, and IBD (Crohn’s/colitis) is far more serious. The OP should not be waiting six months for a colonoscopy - as others have pointed out, it should be a two-week referral. I have had Crohn’s for 25 years so I know what I’m talking about.

I can well believe the long wait.
DD(19 at the time) was suspected to have UC in July 2020. The GP made an urgent referral, the pathway should be 4 weeks from referral. After 3 weeks her letter hadn’t even been read as there was such a backlog.

Called the GP who said DD should go to A&E - she was admitted, had a sigmoidoscopy, diagnosed, treated and discharged after 5 days.

If your symptoms get worse then do speak to your GP again.

OP is being investigated for suspected Inflammatory Bowel Disease which can actually kill if the bowel ruptures.

Ignorant comments make it difficult for people with IBD to be taken seriously.

Please do share information with your employer, PPs have given some handy links. I have UC and had to have another stoma this year (three in 28 years so not too bad), tried to brush it under the carpet which did not go well in terms of my MH and work performance. Once I told work, it got MUCH easier

Not something I'd usually condone but would it be worth going to A&E?

Definitely tell your employer. The anxiety and stress will make IBD worse. Your employer should also be able to make adjustments for you. I had to wait a long time for diagnosis 15 ish years ago and had to give up on my degree as I was so ill. I hope you get your referral sooner rather than later

I have already decided that if I have another flare-up I'll be going straight to A&E, but at the moment I'm having no symptoms so I can't really justify going to A&E, but I know you can have asymptomatic/silent inflammatory bowel disease. I've not lost any weight and don't have anemia, I do have slightly low B12 levels but I'm vegetarian so that might be why.

My GP confirmed that the referral is definitely marked as 'urgent' rather than routine. From my understanding there are two types of urgent gastro referrals - the 2 week cancer one and the 4 week suspected IBD one.

We do have a third party occupational health company who I could contact for advice, so I might do so. I know it's immature but I think I'd struggle to speak openly about this with my manager, if it was any other medical condition it would be fine but because it's bowel-related I find myself feeling embarrassed even speaking to friends about it let alone my manager

I think you should speak to your manager, that you are waiting for a medical appointment at least. All you are asking for it seems as an adjustment is that you might not be able to work in the office but work from home on some weeks.

Nothing to add to the other comments.

That sounds good, I think I can probably keep the detail out of it initially and would only need to be more specific if they wanted to go down the official route of formal adjustments with HR

That's what they're for. Most of us don't want our colleagues knowing our private medical information.

Wish mine were like that @pastabest

Currently in this flare for over a year...and I've had surgery to remove most of my bowel 😭