Crohns research

Digestive health
1

Hi all.

I’m a 30 year sufferer of Crohn’s disease, but not your average simple diagnosis CD. 

I’m just wondering, how many CD patients have any trouble with their IBD consultant actually believing them when they have a flare or when you say you’re really unwell (and sometimes the tests may show otherwise). 

Do you feel like you have to prove that you’re sick? Beg to get put on medication? 

I’m starting to find that it’s one hat fits all with Drs (which CD isn’t) and if you’re not in the norm then you don’t have CD! 

Please coming if anyone else has this problem....’

2

Hi Hollaka!

I agree that some consultants can can be very dismissive.

I have moved quite a few times and have been to several different hospitals as a result.

One of the most memorable was Northampton General where the guy I used to see was a real bombastic a**hole. 

During a really bad flare I started to drop weight (which is not typical for me as I never usually lose my appetite no matter how painful it is to eat!). He actually accused me of using my Crohn's as a weight loss aid!

Another time I told him I wanted to come off of the immune suppressant medication I was taking as I needed some shots for my upcoming holiday to Goa.

His response was 'Tut!, I wish people like you didn't go on holidays to places like that'!

At another hospital I was palmed off onto the IBD nurse.

I have always been told that if I feel really bad between appointments to phone and they will try to fit me in. She was no exception.

However the one time in 30 years that I did feel bad enough to call she basically told me that I had nothing to worry about and that I was 'probably constipated'. 

This made me see red and after an argument on the phone she reluctantly booked me an X-ray and some tests.  

The results showed very high levels of inflammation. I then received a call from her saying that she 'supposed I needed steroids then'.

At my next appointment with her I told her exactly what I thought of her care and that I wasn't prepared to see her again and she collapsed in a heap of tears! 

They are just a few examples of my experiences.

I used to feel intimidated by these people but now, if I don't agree with something that a consultant says, I argue the toss. 

I have never come across a member of staff who actually has first hand experience of the disease and firmly believe that I know my body better than they do. 

Maybe other folk don't feel comfortable disagreeing with medical staff but when you know that there's something wrong, despite what test results say, I feel that you have no option than to be persistent.

Maybe I'm just getting cantankerous in my old age..? 😊

 

3

Then that makes me cantankerous too 😃

It drives me nuts when the IBD nurses just say oh you can’t have this can’t do that sure it’s just IBS when I’ve had crohns longer than they’ve lived on this planet! America was good, they were on point. I’m about to undergo my 3rd capsule in a year which will probably show ok ish as have been on steroids for 18mths one way or another plus 6 mths of biologics and then wants to stop all meds if normal?!? Say what now??? So I’m still symptomatic but now you’re going to halt all treatment?! And then what?! Ugh! It’s a harder battle fighting the Drs than it is fighting the crohns 😫😫

4

It is so reassuring to hear that someone else is finding the process of just getting advice and treatment difficult. My 15 year son was diagnosed 15 months ago and he has still not in remission. He has missed so much school I have lost count and the consultants never  back to me. When I ring up the response I get from the secretaries is I sent an email. He is in such pain physically and the emotional stress of wondering if he will get out the door in the morning, make it to a hockey match etc has taken its toll on both him and me. How do you get them to care enough to help you. I spend so much time in tears some frustration, some sadness at the realisation of the battle he has before him. No one who has not lived with this condition can understand the affect it has on your life. If you have any suggestions that would support my son - for getting appropriate treatment, helping him accept and adjust his life I would greatly appreciate them. I wish you all well with your daily struggles. Thank you

 

5

Hi. I’m sorry to hear your son is going through this, it’s such a horrible disease & it’s awful when kids get it (I was 8 so know first hand just how awful it is). The Drs are such hard work. Can never even speak to mine, I have to call the IBD helpline or email them. Well I emailed them 9 days ago and still waiting for a reply 🙄 Luckily it’s not urgent but even still 9+ days is a joke. 

What I will say is, if he’s having a bad flare, don’t wait for the Drs to call you back, go straight to the ER, that’s the quickest route to be seen by a gastro. Otherwise you could be waiting days & that’s a long time to deteriorate. 

Is he on any medication? Without treatment it’s very hard to get up & running. Have you thought about doing part time school & homeschool? Back when I did my GCSE’s (which was a very long time ago), I got a medical expemption which helped as I’d missed so much school so that was taken into account when marking my exams. 

As for accepting it. That’s a tough one as 30 years on I still don’t like accepting it, so he will in his own time. Check out crohns in childhood & maybe some crohns forums he could join,

I hope it all gets better for you soon xx 

6

Diagnosis seems to be an issue with GPs and GIs