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Getting admitted to hospital to test for Crohn's disease, does this sound right?(28 Posts)
Dd has just turned 18yo so deals direct with her gastro consultant now. She has coeliac disease and weight loss continues as do other symptoms. Her GP said he thinks she has Crohn's and did an urgent referral back to her gastro consultant.
Dd told me today she's probably going to miss her A levels as she's been told she will be admitted to hospital in around 2 months time for a few days for tests.
She says she's spoken to her consultant about moving it back and apparantly he said he didn't want to because he thinks due to her symptoms it's urgent, this is the earliest he can get her in and that if she doesn't come then it will be months and months afterwards because he's already booked people in after her. Saying that she doesn't have an exact date yet and she says they will ring/write with an exact date nearer the time.
I just assumed she would be having a colonoscopy as a day case, why would she need admitting for days? She says he's said they want to test for bowel cancer but again wouldn't that just be bloods/colonoscopy?
Obviously her health is more important than her A levels and if she misses her exams then she misses them.
Sounds a bit odd to me, if they were worried about cancer she wouldn’t be tested in 2 months time, it’s be 2 weeks surely?
Well quite. She is a bit of a drama llama. She said the consultant said with Crohn's disease bowel cancer is quite likely. I think he may have said something like there's an increased risk so we'd check it out while doing other tests.
I've just not heard of anyone being admitted for Crohn's tests.
I know someone who was in hospital for 8 days recently due to their Crohns but not sure about testing.
Is she trying to avoid the exams perhaps? Even if she was in hospital she would need medical evidence to apply for extentunating circumstances.
I did wonder about trying to avoid the exams but obviously I'd notice if she was actually in hospital or not. She's not just going to be able to bunk off to a friends house and pretend to me that she's in hospital for a week! So if she reckons it's going to happen it does sound like something that's been mentioned.
In my experience (I have crohns) all of my tests are done as an outpatient. They take biopsies as part of a colonoscopy. If her consultant really thinks she may have cancer then she would be seen under the 2 week rule.
Is she definitely following a gluten free diet?
I have crohns and haven't been kept for several nights in the hospital. Was diagnosed a decade ago so don't recall if I was in overnight but never did more than 2 nights at a time in hospital.
She said the consultant said with Crohn's disease bowel cancer is quite likely.
If you have crohns you have an increased risk of bowel cancer but that is over a lifetime.
I was in hospital for 7 days recently for treatment of crohns but that was following a large GI bleed, not any routine tests. Even when I was first diagnosed it was all done via outpatient tests.
She's definetely following a gf diet. She's had the odd mistake. She picked something up in m&s free from section the other day and ate it assuming it was free from gluten. It was free from meat, so had a big reminder about reading everything.
She has blood in her poo which is new since January so I don't think it's related to coeliac because she didn't have it when she was poorly just before diagnosis.
Even without suspecting cancer, if they thought her Crohn's was very very severe they'd be getting her in for investigations before 2 months.
With my Colitis it was less than a month from GP appointment to colonoscopy.
The being admitted doesn't quite ring true to me either.
She should receive a letter summarising her appointment and the investigation plan. Tell her to let you know when that arrives so you can go through it together. She would need to submit medical evidence of not being able to sit her A Levels at the correct time I think.
Thanks, when I look up all the results it's all stuff which can be done as an outpatient, mri, endoscopy, colonoscopy, etc.
Guess I will just have to wait and see what actually happens.
If her consultant suspects crohns did they not give details of the IBD nurses? My hospital has a nurse helpline staffed M - F 9 - 5. Outside of this I can call and bleep the IBD registrar. They would be my first port of call to arrange tests, change medication, admit me if necessary.
Or she could phone the consultant's secretary and explain the situation with her exams and see if they could organise the colonoscopy for an exam free day?
She says she's already rung and spoken to someone about rearranging and they said it wasn't a good idea.
I do suspect she doesn't want to rearrange and is hoping to get tests on an exam day as she thinks then they will give her her predicted grades. Which were good. She might get a shock if they give her her mock grades which weren't good!
And no, she hasn't been given details of an IBD nurse.
I'm not sure (though I don't know) that they will do that re grades for routine tests. I know a student who had his appendix out during GCSEs. The teacher had to bring his exam paper to the house for him to take it. He got a small consideration. They didn't let him just not sit them.
I think there is more going on here. A levels are what May and June? Why would the hospital be ok with keeping her waiting for these tests for over 2 months but they can't wait a couple of weeks longer or be worked around exam dates?
Maybe a gentle chat with her about all of this? Has she seen her consultant since the GP re referred her? She could also phone the hospital and see if they have an IBD nurse there. Mine are fantastic and will liaise with departments and my consultant on my behalf.
Sounds completely bizarre and she’s either having you on or has misunderstood what has been said .
I think misunderstanding is a possibility, she's away with the fairies half the time!
If she misses exams they do not look at her mock or predicted grades. A lot depends on how many exams she misses. She can take the exam in hospital if needed.
It sounds like your poor DD has a lot on her plate and is trying to dodge her exams, if I am honest. I have medical problems and try to dodge stuff so it all sounds a bit familiar. I wonder whether they asked her when would be a good time for the tests and she offered up exam time. I am not sure what the answer is if she is handling all the appointments etc on her own.
Blood can be from coeliacs, my aunt was diagnosed as coeliac around the same time as I was diagnosed with ulcerative colitis. We both had exactly the same symptoms, bleeding, mucus, urgency etc.
Now if she didn't notice something had gluten in it, then she could be suffering from that. Also are you using different utensils and pans when cooking? You have to avoid cross contamination.
I would definitely attend her next appointment, just so you can avoid the cancer situation again! Consultants aren't always the best at explaining things in layman's terms and certainly not for a young person. Also, finding out you have a lifelong condition can be a shock and it's difficult to take it all in.
We're not using different pans or metal utensils as they will have been in the dishwasher before she uses them so I was told that was ok?
She has her own toaster, uses clean plastic bread board, different wooden spoon, has her own butter, peanut butter, etc.
Yeah, my aunt found that she was still suffering, so started to use new baking trays and utensils. Apparently non-stick coating can be a problem!
Another thing to consider is if your dd wears makeup. Loads of cosmetics and toiletries contain wheat and can also be a problem. Lipstick could be a culprit.
My DS2 was recently diagnosed with Inflammatory Bowel Disease (Crohns and Ulcerative Colitis are the two) and it was done urgently, after months of passing blood and pooing 20+ times a day he was given a colonoscopy within 2 weeks, diagnosed and started on treatment the very same day and seen at the IBD clinic 4 weeks later.
Your DD's story definitely does not ring true... unless she is REALLY critically unwell, in which case they would admit her immediately (My DIL also has Crohns and has been admitted many times but it is as and when it reaches a critical point)
Cancer is a long term risk with Crohns not an immediate one.
I suspect your daughter has either misunderstood is is basically trying to get out of ehr A level exams! A chat is defo needed!
(My DD1 DID have to miss her final chemistry paper due to her Gran dying and the funeral being that day and they took her predicted grade, but that was for one paper only)
I think it;s very unlikely they would be arranging to admit her several months hence!
It's a good point about you going to appointments. As an adult I sometimes like to have someone with me at appointments because I can't take everything in and might forget to ask questions or be overloaded with information.
Also when she does have a colonoscopy she'll likely have sedation which means another adult will have to be with her to bring her home (you are not supposed to be left alone for 24h after sedation.
If this person will be you, you have good reason to be involved in appointments from now on.
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