Morning!
Looks like you've got a fair good answers here!
I'm currently 30 and got diagnosed with Crohns when I was 25. I've tried so many drugs now, hence the Infliximab as you have to try so many different things and if they don't work they then resort to Biomeds. One thing I know is that the steroids (I'm assuming you've got Prednisolone) are fab and always managed to sort me out. The only problem with them is that they're not good for your body in the long term. I ended up being dependant on them, as soon as I tapered them down I would flare straight back up again. I worked out that, in March, I had spent about 14 months out of 34 free from steroids and that when my doc said enough was enough THANK GOD!
That's good that you've got a IBD Nurse! Are you able to call them if/when you need it? That's the main thing you need to ensure you've got; access to a helpline if anything goes bad suddenly. GP's are alright but, in my experience, they know very little about Crohns. I usually ended up going into see them and telling them exactly how many steroids I needed and they happily obliged as they didn't have a clue how to treat me and, usually, you can't get an emergency appointment to see your consultant!
MY Hospital are fab (thank god) they've got a Flareline with 2 numbers, 1 for bad flare emergencies and another for non-urgent advice. I rang them on Wednesday as I've been having some really bad problems with constipation now! (a side effect of the Infliximab) and they got me in for an xray within the hour and once I had that they looked at it and gave me a consultation and advice over the phone. That is exactly what someone with IBD needs, help as soon as they need it. None of this 2 week wait as, by that time, I'd be incapable of leaving the house!
KEep a written record of all your symptoms and any changes (good or bad) that you note with each medication so you can give your consultant a really good idea of what works for you and what doesn't. From my experience they tend to start with the lesser effective drugs first and move you up if they don't work. If Pentasa doesn't work for you then I'm guessing Azathioprine will be your next point of call. Aza is good, i've been a lot better on them than any other drug I've tried even though I'm now on the Infliximab as well.
I know exactly what you mean with regards to the healthy eating! Crohns almost forces you to eat all those foods that are recommended you stay away from! I used to be all about the '7 a day', brown bread and all that stuff! You're doing good with the carrots though, they're supposed to be the best food for anyone and everyone as it's so soft on your system. I do manage with brocolli/cauliflower etc, I just make sure its really well cooked so that helps my system process it.
I really feel for you though, we all know too well what its like to be in flare, eating rubbish foods and not seeing any positive results. The main thing is to focus on the small, positive things you can do like going for a nice stroll, enjoying a bubble bath, treating yourself to a manicure. ITs things like that that can really affect your state of mind and, as we all know, that plays a massive part in calming the Crohns down. So start planning some nice things to try and take your mind off it and take the anxiety away a bit, reassured in the knowledge that the Steroids WILL sort you out as well! You just gotta give them a few days to kick in and remember to taper them down as prescribed (I'm sure you'll have been told how dangerous steroids can be if you suddenly stop them).
Keep us posted on your progress and the 'happy' things you're going to get planned! Crohns is hard to adjust to, yes its for life but that doesn't mean that you can't have a life! Just a little bit of a different one.
What doesn't kill us makes us stronger and Crohns sufferers/Colitis sufferers are some of the hardest people I know!!!
Lots of love xxx