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?

Hi there, I have recently been diagnosed with UC. Why on earth is it taking 6 months to refer for a colonoscopy? I had one within 2 weeks! Passing blood is a potential bowel cancer symptom so they really should do better.

If you look on the chron's & colitis UK website, they have a great PDF for employers. I would just forward that to them and say that you haven't had a diagnosis yet but that this is suspected. My employers have been very good - I am a teacher so cannot be without a TA in the classroom due to frequency/urgency of bathroom visits.

Due to a huge backlog and waiting lists, they said it will be at least 6 months. My referral is urgent as well, the current state of the NHS is really worrying. I contacted my GP to check that my referral was put through as urgent and they said yes, and there's nothing more they can due as there are huge waiting lists at the moment. :(

I'll have a look at that website, thank you :)

A lot of people go private for initial colonoscopy.

Just a thought if the wait list is too long for you to manage.

Yes absolutely go private if you can. I am so much better since being put on medication. The bowel prep for the colonoscopy - and the procedure itself - was awful and caused a huge flare-up but so worth it to know what's wrong. I was referred under the 'two week rule', which was mentioned several times by doctors. Worth asking about that.

Might be worth asking the doctor if you can start medication before diagnosis? Something like Salofalk?

Yes, speak to your work.

Do you have an HR department? Or could you speak to your manager?

Just explain exactly as you have done here. It may require you cancelling meetings and/or travel in the future (at short notice) so they need to be aware and be prepared that this may happen.

They also owe you a duty of care. And you may need to take time off sick.

I hope you feel better soon and get the right treatment to get your symptoms under control.

Have you also had blood tests to rule out coeliac disease?

OP you cannot wait six months when you have a symptom of bowel cancer. Keep pushing the GP and hospital as this is not acceptable.

I would definitely tell your employer. IBD is most likely classed as a disability (I say most likely as you don't currently meet the "12 months or more" criteria, but IBD of course is likely to last more than 12 months) so they will have a duty to make reasonable adjustments to your role. Perhaps you could join these meetings remotely or break up your travel into smaller chunks or something?

Hello - I'm a UC sufferer and you should definitely tell your employer.

Sorry you are having to wait 6 months for your appt! That's crazy and I'm really surprised despite the NHS backlogs. I'm assuming you've had a full count blood test? Are you on any medication?

During those bad flare ups leaving the house and travelling causes so much stress. I've been house bound for many months because I couldn't be far from a toilet, and times I had to go out I wore one of my sons nappies.

You cannot wait 6 months. As well as having symptoms of bowel cancer, untreated IBD can be life threatening. It can rupture your intestine.

Have you asked your GP if they can refer to different hospitals rather than just your nearest one?

Are you being treated at all for your symptoms? Any antispasmodics or steroids? They can't just leave you untreated for 6 months, it's not safe.

I had a full blood count and everything came back as normal. I did a stool test which came back as really high inflammation. I don't have any symptoms on a day-to-day basis apart from what I would describe as a 'nervous stomach' with urgency in the mornings. The flare-ups I described lasted 3ish days and were a couple of months apart, so they are on a very occasional basis. I'm not on any medication

My GP basically just said there are long waiting lists for even urgent appointments.

Yeah I had the blood test for coeliac and it came back as normal

It's a bit weird for a 3 day flare up where you go every 30mins to 'fix' itself after such a short amount of time.

Dh was in a similar position to you. Ended up going private because of the wait. He was deemed as urgent too but was waiting too long to get seen and had no quality of life, was having accidents constantly so going private was the only solution.
I would print out some information about IBD and send it to your bosses. They have a responsibility to support and accommodate here. Best of luck. DH says that once you are diagnosed, a mental weight is lifted somewhat as you know what you are dealing with x

With IBD symptoms can come and go. DH had a massive flare up the first time around. It went away for a month then came back. Same thing happened again and then it got to the point where it wasn't going at all so OP is definitely not unusual in that respect. Symptoms don't have to be continuous.

I'd definitely tell work,as PP said Crohn's and Colitis UK have a great leaflet you can give them.

Is there any chance your employer would help out with the costs for a private colonoscopy; medical cover? That sort of thing.

You really need a quick diagnosis to get started on steroids and something like asacol.

Also I'd possibly consider trying a lower fibre diet to rest your bowels a bit
www.stmarkshospital.nhs.uk/patients-visitors/patient-information-leaflets/guidelines-for-choosing-a-low-fibre-diet/

A family member has UC flare ups like these. Usually linked to consuming gluten accidentally as they are also coeliac.

What country do you live in?
In England a cancer pathway means you should be seen more urgently. It is all within a number of weeks.
Also ring the hospital and say you will take a short notice cancellation.

I have found it really makes a difference what GPs say in the referral by the way. Everyone is expressing surprise at six months because this sounds like a routine must be investigated wait. Even with the backlogs this is longer than you should be waiting. Unless the GP is pretty sure it is nothing and this is a double check investigation.

@Quinoawoman they won't want to give anything before a colonoscopy as it could mask the inflammation. We have kids on my ward for diagnosis and treatment starts immediately afterwards. Either steroids or modulen diet as a rule.

Keep a stool diary and take photos of your stools. The consultants will want to see them. Particularly if there is blood.

I'm not on the 2 week suspected cancer pathway because my GP doesn't think it's bowel cancer, I'm on the suspected IBD referral (I'm meant to be seen within 4 weeks).

I can't afford to go private so I don't think there's anything I can do other than wait? I phoned the hospital to chase up my referral as the referral hasn't even been reviewed yet and it's been 3 weeks, and they said that urgent referrals made in December are getting given appointments in June/July. I then contacted my GP and they said there are long waiting lists for everything at the moment.

I don't mean to sound like a twat, but GPs can get it wrong.

Thanks for clarifying. Urgent here does not mean what you think it means. It means it is important, nit urgent, urgent. IBS is nasty, but it is an ongoing illness that rarely needs immediate attention.

@BradfordGirl IBS and IBD are very much not the same thing

Definitely speak to your boss.

crohnsandcolitis.org.uk/

Has some good info on how to talk to work and provides a leaflet for them to read.

It can also count as a disability which allows for reasonable adjustments at work.

I've had it for 30 years ....!

Good luck with diagnosis and treatment