Frustrated

[SarahT86]

Hi everyone,

I'm going to apologise before I start writing this as it's going to be very "ranty".

Basically, I found out I have Chron's 3 years ago. Since that I have tried loads of different drugs, none that worked so got moved onto Humira. I had just got used to the horrible injections when I was told it wasn't working and that the only option I had left was surgery. This was back in June. So reluctantly (I'm on 25) I said ok.

I've been planning the trip of a lifetime with my friends to Oz next month, I told the hospital all about it and they were aware that I would need the op before I go. Flights and everything booked and all ready to start my 3 month trip.

Few more appointments at the hospital, gets to September, still no news on the op. I followed it up with my consultant who kicked some butt and got me an appointment with the surgeon. I finally saw the surgeon at the end of October who told me it was too late to have the op before I go to Oz. Had an appointment with my consultant yesterday who said I basically should cancel my trip as I'm risking my life going without having the op!!

Does anyone have any suggestions on what I could do? Could my Chron's really get so much worse in 3 months?

Sorry again for the long and ranting letter!

Sarah x

 

[Jessi]

Oh yes, Sarah. It can get a lot worse in that much time. So sorry. :hug:

Welcome to the family. We have some good people here who are from Oz. Where are you from?

I'm sorry that you have to cancel your trip. I would be really upset about it, so I'm sure that you must be very frustrated. Can it be rescheduled for a fee? Or would that be impossible because of your friends' schedules?

Another thought... have you tried another biologic like Remicade? Maybe you wouldn't need surgery?

Sorry I don't have advice. Just a bunch of useless questions. Hang in there. :hug:

 

[SarahT86]

Hey Jessi

Thanks for getting back to me. I've never been on one of these forums before and it's actually really nice to rant to people who know what I'm talking about!

I'm from UK, how about u?

I wouldn't be able to reschedule as all our flights etc are booked and I don't want to mess my friends around. Plus we all have a set time off work. I really don't know what to do, whether just to go and chance it!

I've never tried Remicade? What is it? Would I have to have regular check ups?

Thanks again x

 

[Sybil Vane]

Did the surgeon tell you why you would be risking your life? Would you be risking a bowel perforation or are you bleeding too much? Can you get a second opinion? I live in the US, so it's easy to get a second opinion here, but I realize it might not be in the UK.

 

[DustyKat]

Hi Sarah and :welcome:

As Jessi said, it can get worse, .

I am so sorry to hear about your trip. They diddle with you since June and now tell you this! How frustrating for you! Grrrrrrrrrrr!

What are your symptoms?
Put the consultant on the spot and have him tell you exactly why he has said that.

Of course your health is the most important thing but should you make the trip where are you heading?
If you are going outback it is pretty darn remote and the only access to medical services you may have is via the Royal Flying Doctor Service. Remember, the distances here are vast.
We have a reciprocal agreement with the UK so should you rock up at a public hospital, have your passport with you and your treatment will be free.

Dusty. xxx

 

[SarahT86]

Hey guys,
Thanks for your replies.
He was saying something about a fistula? Tbh I wish I had taken someone with me as it all went way over my head. I'm booked in for a MRI next week to see how bad things are so guess I'll have to make a decision after that.
We are starting off in Sydney for Christmas and new year then working our way up to Cairns, can't believe it's only 4 weeks away.
Symptoms - basically I'm in pain every day but it's been like this for so long that it almost feels normal now!
Sorry guys you must think I'm a right moaner!!
Thanks for your help xxx

 

[xJillx]

Welcome Sarah! Don't worry about venting on here! We all need to vent.

I am sorry that you have to miss your trip, but if your GI is concerned about your health, it is best to put it on the back burner. Your health is #1. I hope that surgery will get you well and keep you in remission for a long time!

 

[Jessi]

Sarah ~ Remicade is a biologic similar to Humira, as it is a tnf-alpha blocker, but it's administered via infusion every 8 weeks after the first 3 loading doses. Remicade is very good at healing fistulas, so I'm surprised that your doc hadn't mentioned trying it out before surgery. I am getting Remicade infusions and am now in remission!! It might not be too late to try it out. Maybe you could still go on your trip.

 

[SarahT86]

Thanks for your help guys!
I'll let you all know how I get on.
xxx