Does a level of 375 calprotectin always mean crohn

[Poppi2015]

Does Ievels of 375 calprotectin always mean it crohns.

[FRreedman]

Not necessarily, it does mean IBD is more likely than IBS, but cannot determine whether Crohn's or Ulcerative Colitis, which would normalised a colonoscopy to determine.

[Poppi2015 in reply to FRreedman]

I don’t get diarrhoea.

[FRreedman in reply to Poppi2015]

Neither do I, but I have Crohn's disease, (I wish he'd take it back.).

[Poppi2015 in reply to FRreedman]

Is it really life changing? Did your symptoms just start?

[FRreedman in reply to Poppi2015]

Yes, in as much as I now have to plan everything, and can't just go for a ride in the car. I had to make sure that a toilet was available at work, and that I knew where the nearest two toilets were (just in case one was engaged). It makes you more liable to other illnesses and conditions ( rather the medication can and often does). You will find that some vitamins are not absorbed into your body, and you need regular blood tests and injections of supplements. When you have a flare, you become lethargic. Doctors (not GI consultants) blame everything you ever get on because you have Crohn's!!!! Don't accept that answer, well not every time, anyway. Having said all that, I have one son and two grandchildren, and a wonderful wife (nearly 41 years) so it's not all bad. The most important advice I can give you is:- If it hurts say ouch! If you need the loo, don't be embarrassed, go and find one. If you can't keep to the plans your friends have organised, apologise but cancel. If they are true friends they will accept you and it, if they are not- why waste your time and energy on them?

[Poppi2015 in reply to FRreedman]

It’s my 19 year old that may have the condition. I just suddenly from nowhere started. Literally a week after starting the contraceptive pill. She had no symptoms of this before

[FRreedman in reply to Poppi2015]

There is no point in worrying about it at the moment. Wait until you see the GI consultant/team, and they will advise you. You will also find that once things start happening they are never as bad as you thought they would be. Sometimes, I think it is worse for those close to us, as they can only guess how we feel and how bad the pain is, but we know how much we can take and what our limits are. Just tell her she doesn't need to put a brave face on things, but neither should she wallow in self pity.

If you've got any further questions, I happy to answer them, but I've got to go and lie down for a bit now. Good luck to you and your daughter.

[Poppi2015 in reply to FRreedman]

Thank you. I just don’t know how she will manage or cope if it is

[Viklou in reply to Poppi2015]

When does she see the consultant. All I can say is manage the best you can till then

[Poppi2015 in reply to Viklou]

It was May, but gp wants it brought forwards

[Viklou in reply to Poppi2015]

Have you actually received the appointment?

If so ring the appointment booking number on the letter and try and get it brought forward yourself. Don't rely on the GP. Remember this is you and your daughter dealing with this on a day to day basis. One thing you will learn is to advocate for yourself. When did the GP do the referral?

[Poppi2015 in reply to Viklou]

Thursday evening

[Viklou in reply to Poppi2015]

Oh, I'm a bit confused. I thought these issues with your daughter started happening last year!!!.

Anyway if the GP referred you on Thursday have you now got an appointment in May to see a gastroenterologist ?

[Poppi2015 in reply to Viklou]

Hi we first went to see gp december who asked for stool sample which came back 375 calprotectin levels. The first gp referred us to see gastroenterologist and appointment came through for May. We went to see another gp Thursday who has requested the hospital see us sooner

[Viklou in reply to Poppi2015]

Ok like I said before get the appointment letter and call up the appointment line yourself and see if you can bring it forward. Stress that your daughter can't wait till May to be seen. Tell them how bad it is. See what they can do.

This does work as I managed to change mine before Christmas to only a 6 week wait. Granted I'm already under a gastro consultant and my GP did write to them to state her concerns.

My appointment was next week but sadly cancelled due to unforeseen circumstances and it's now in March but at least i called and got my scheduled appointment moved from July initially

[Poppi2015 in reply to Viklou]

Will do

[FRreedman in reply to Poppi2015]

Don't worry, I was 11 at diagnosis, and my parents were worried, like you are (it's only natural) about how I would cope. Apparently, I just took it matter-of-factly, made a list of questions, asked my consultant (who was absolutely brilliant) and dealt with any problems as they arose. Your children are much more resilient than you think.