Referral for Crohns/ulcerative colitis

[Deardonkey]

DD has been unwell recently, diarrhoea and bleeding/pus when going to the toilet.
The GP made a referral to a gastroenterologist after her initial tests showed a probability of IBD. DD now has to wait 18+ weeks to see the dr at the hospital for diagnosis and treatment.
Has anyone been referred for the same recently and also had a long wait? Is there anyway to speed it up as I’m worried DD (20) is going to get worse making her even more unwell.

Why so long? I have a friend who has received a similar diagnosis following preliminary tests and she had a colonoscopy at the hospital about 3 weeks later. 18 weeks seems like a long time if she is bleeding and in pain.

The dr said she would make an urgent referral, I called the hospital appointments line and they said it was marked as routine (so 18 weeks but maybe longer due to Covid). The letter still hasn’t be triaged (as the drs are busy due to Covid), maybe then they will decide she needs to be seen sooner.

It took me years to get diagnosed! I had symptoms from around 5 years old and a family history of IBD and I wasn't officially diagnosed until I was 30.
A new GP (was actually a student dr) referred me to have an urgent colonoscopy appointment to rule out cancer, but the hospital cancelled it as I'm too young!!! So I think I had to wait about three months.

I got dx about 10 years ago OP - like your DD I was referred and it would have taken a while.

One weekend I was in bad pain, called out of hours and was sent to hospital. They did a scope and dx it then. So within a week or 2 of going to gp instead of months.

I’d do that if she’s in pain. It’s bloody painful, i feel for her being right at the start of this process.

I imagine they have a massive backlog of people to see because of Covid.

During the peak, many Gastroenterologists would have been redeployed to Covid wards like all other hospital doctors, and all non-cancer appointments were probably cancelled.

So now that they’re getting going again, they have to fit in not only all the new referrals coming through, but also everyone they haven’t been able to see over the last 4 months.

And they have to do that at a time when they physically can’t see as many patients a day as they used to, as rooms have to be cleaned between patients...

It’s a nightmare.

And as a pp says, the only way to speed it up will be if she gets worse and ends up having to go to/be admitted to hospital before her scheduled appointment.

Was the same when I was diagnosed 15 years ago aged 20.

Family history of IBD, diarreah with blood, cramps, pain, couldn’t leave the house. Referred and the wait list was so long my parents paid for me to go private. About £5k but the doctor who ended up doing the colonoscopy privately said if they hadn’t paid and I’d waited another 3m estimated for the appointment I’d have lost my bowel it was getting so damaged. As it was I almost needed it removed but luckily some intense treatment from both ends with the meds got me into remission.

I was diagnosed about 20 years ago but only after I went privately. My symptoms had been diagnosed as IBS for ten years and GP refused to refer me to hospital.

Sounds painfully familiar. When I was diagnosed over 10 years ago, it was a 3 month referral wait - even though I could barely leave the house without shitting myself.

Fortunately I had private medical insurance through work and got seen in a matter of days.

Terrifying how many identical stories. Nothing changes ...

The IBD teams seem so under resourced to me, I would just keep chasing for the appointment as tests take ages too. Good luck and hope you get answers soon

So sad to see so many have had to wait or only get the balk going when see privately.
I called the GP this AM and said her referral needed to be marked as urgent, due to a worsening of symptoms she was told to go to A&E. She’s been admitted to the medical assessment unit and Gastro will see her later on today. Glad I chased it up as she’s getting really unwell.

Hope she’s okay OP best wishes

Sorry to hear that, but hopefully she’ll get a diagnosis and they can get her started on getting better.

Poor thing. I suspect DH has the same (but will he go to the doctor?).

Diet really does help - as does lowering stress and doing regular exercise. Alcohol is bad, certain foods are bad - but some foods seem to help. I’m not sure if it’s the same foods for everyone but we’ve found that ‘butter’ foods (ie red lettuce/radicchio are very good but red peppers and broccoli is bad - but purple sprouting broccoli ok).

Glad she’s getting seen. We had the same issues with Dd. Blood test was positive for coeliac and then a six month wait for an endoscopy. I rang every hospital in a 100 mile radius and spoke to every gastro secretary to try and find a shorter waiting list with no luck. I begged for her referral to be marked urgent and they said even urgent ones were 4 months, i told them she’d be dead by then.

A few days later she collapsed unconscious and was admitted to hospital. Severely malnourished and underweight. The drs kept asking me if she had severe anorexia. Her bloods were abnormal, with dangerously low potassium levels and she was kept in for over a week!

This was all pre-Covid so I think there is a major problem with not enough resources in gastro depts. later on she had a colonoscopy and had a six month wait for an appt with her consultant to discuss the results!

Btw, have they tested your Dd for coeliac?

DD is being really well looked after, she’s been seen by a few people now. They’ve started her on steroids and given her other medication too, she’s also had an x-ray and is having a sigmoidoscopy at the moment. It was the right decision to take to A&E.

It’s really hard not being able to be with her as they aren’t allowing visitors but I do feel they are taking her condition seriously and treating her well.

@JacobReesMogadishu the coeliac test was negative, grateful she doesn’t have that too.