Freaking out a little bit.

[emmaaaargh]

Hi everyone! It seems like the only time I post in here is when I'm asking for help. Ugh, seems so selfish of me... but whenever I want to reply to a thread others have posted, I end up thinking what I've written is stupid and erasing it!

Anyway, enough of my rambling. So, about five minutes ago, the phone rings and my dad picks it up. Usual, right? Yeah, sure, whatever. So then my mum comes into the kitchen and rifles through the calendar - because we've just had a reminder that I have an appointment on the 3rd of July.

Uhh, what? No I don't! My next appointment is on the 19th. So I tell Mum this, and she asks Dad where the appointment is. Dad lists off the name of a ward and I recognize the hospital (I'm currently under doctors at two hospitals). But the last time I went there was for my colonoscopy, and we haven't heard from them since.

So here's where I start freaking out a little bit! When I was discharged, my discharge letter said on it "appointment to be made for return for Infliximab infusion", which is as far as I'm concerned the route I'll take if there is literally nothing else. I don't want to be on Infliximab at all. I really don't care how great it's worked for other people - I'm 13 years old, starting my GCSEs, and I do not need to be missing days every couple of months to trek up to London for an infusion with the possibility of an allergic reaction (which sounds terrifying, by the way) happening.

Luckily, my doctor at the other hospital agrees with me! (And here's where it starts to get confusing, so my apologies if anything isn't clear). He said to me the last time I saw him (which was about a week ago) that first they'd rather try me on something else, like Azathioprine. He says it's too early to be making plans yet since I'm currently not even fully off the prednisolone and they want to check how that's worked. Both of my doctors run a joint clinic in July, so we made an appointment for then so we could check everything out (that's my 19th July appointment).

So... why have I got a phonecall now for an appointment I had no idea was happening? Add that to the fact I'm kind of scared of my doctor at that hospital (he doesn't have a very good bedside manner, to put it nicely - for example, he suggested I see a psychiatrist when I expressed a dislike for needles aged 11!) and I don't have a clue what's happening at the next appointment... and I'm a little more than worked up indeed.

Ugh, this is all so confusing! I'm just kind of concerned. This train is moving way too fast for me, and I can't see any way of stopping it - does anyone have any idea what I should do?

 

[Jennifer]

Now its my understanding that you have two GI docs that work in the same clinic? Is that right? You also like one better than the other? Why not just see the one you like and break up with the one you don't like? This way you'll have less confusing care. You don't have to keep the appointment for the infusion but you're also under age and that usually means that the final decision is not yours. Let your parents know that you don't want to do it and you want to go a different route with the other GI. Hopefully they will listen to you. On the other hand, keep in mind that all medication has the possibility of a severe allergic reaction (even the other meds you're on) so I wouldn't let that be the main deciding factor (or the needles, that was rude of him to say btw). The idea of trying out other meds before trying the ones that are injected directly into your body sound like an ideal course of action but I also don't know how bad your case is or which is really better for you.

Keep us posted.

 

[pachamama]

emmarrrgh, you may have had a cancellation of someone elses, they have certain targets and move people up and down lists on the nhs. Stick to the joint meeting and do what you feel is right for you if that is the doctor and care path you prefer...I am sure your parents will support you in this. I have had great success for 12 years on a maintainence dose of azathioprine. try not to freak, if we keep a steady head the body usually follows.

 

[SarahBear]

Did you call them / have your parents call them and ask what the appointment is for? I'd make sure it isn't just a follow up or something silly before getting worried about it.

Also, if that IS what the appointment is about, try telling them you want to discuss it with your GI beforehand. If there are other options you and the GI both think are better for you, it makes sense to try those first.

It seems like you have a good GI who listens to you, so discuss it with him and trust that he'll make the best decisions for your care. There's no need to worry! :hug: