Anyone got Crohn's Disease?

[Mischance]

My 18 year old GS has this and it seems impossible to control. Steroids work (with lots of side effects) so they tail them off and all hell is let loose. Also started anti-immune injections/pens but they have not kicked in yet. Why do they tail off the steroids before the new treatment has kicked in? - this has now happened over and over again. And he never sees a doctor - it is a specialist nurse.

Anyone out there been in this situation or have an helpful advice?

Thanking in advance.

Unfortunately with Crohns it really is trial and error as exercise different. With steroids I need to reduce by 1mg every couple of weeks but my sister manages better and can decrease faster than me. How long have they had jt?

Which biologic? How long has it been?

Thanks for your reply. About 18 months. They test to see if pens have kicked in, which they haven't, but still stop the steroids, so effectively left with no treatment, with the expected outcome

I am not sure what it is called ... but we do know it has not kicked in from tests that have been done.

I thinkmi was about 3 years before I settled on medication that suited me. Steroids do a lot of damage, particularly in a growing lad so they will be trying to get him off them as quick as possible. When he sees his nurse does he take someone with him? Maybe he needs a bit of help to speak up a bit?

When did he start the current biologic? Crohn's can take longer to respond to biologics than ulcerative colitis - and if he's been poorly for a long time it can take longer to see the benefits.

If it's had no effect after 6 months they should switch him to another one.

It can take awhile to get under control. We’ve got both ulcerative colitis and crohns in my immediate family. The family members on the injections are doing very well. I’m on steroids and immune suppressants and no consultant care and it’s not under control. I do finally have an appointment
I suggest your GS goes back to his gp and gets referred again or requests a consultants appointment.

Thank you for your replies ... I am sorry that others are going through this. I guess we have to be patient but it is all very frustrating. Should be starting uni in a few weeks .... don't know how that will pan out.

Has he got DSA for uni? There might be support that can be put in place to help him.

I really hope this treatment works for him.

Are you in touch with any charities? My brother has crohns and was helped tremendously when he was younger by charities. Where are you based?

swanling - the uni have been very good and advised about DSA.
Cosycover - he is in the NW.