Dingleeire- Good to hear that 6mp is working for your son, I hope that he gets many more years relief with it. When you read about
side affects with drugs, they half scare you to death but that somewhat balances out when they work and you can see a quality of life return.
When they go off to college/uni it is scarey lol. I used to have it marked out on my calendar when he needed to re-order drugs, when he needed a blood test, prompt him to get his flu vaccine and remind him no live vaccines lol.
You can tell how much I have let go because I now haven't a clue when any of it is due ;).
There is a fair amount of help (here in UK at least) when they do to Uni, they have disability services and a disability allowance which can help with all manner of things (like providing equipment for study and paying for the difference between a standard and en-suite room, extensions on getting work in, extra time allowance if the student needs to leave an exam to use toilet etc. Try and utilise theses services because it can be a big help, we have all these in place for son just in case, but so far, so good!!
crohnielass-I think it is true what you say about growing up with it although it is nothing I would wish upon anyone.
You obviously have a very positive attitude and tbh I think that goes a long way to how well you cope. Son did ask consultant at last appt what were the chances of him having surgery at some point and consultant replied that if he had asked that when initially diagnosed surgery was looking a sure fire thing but as things are now he couldn't say.
I think that we have been lucky with the consultant. who feels like a friend, not that we would go and say "Hi bud, how is it going ?" but because he really does seem to take an interest, not only in the aspect of his health, but he remembers what degree he is studying, what he has learnt/done and he notices the small things which I really wouldn't expect a consultant to notice and comment on it. I hope you continue to be well for many years.
minnietoty-Son did the tapering of Entocort too (he hated that drug and said he doesn't want to take it ever again) The side affect for him on it was that he became plastered in acne from head to toe, swiftly followed by an oral fungal infection, which was his low point and asked why his body was turning against him! After the Azathioprine kicked in, on two occasions they tried to get him off the Pentasa, their thought being that if the Pentasa hadn't worked alone and the Azathioprine did work then he didn't need the Pentasa. Not so, symptoms returned so he is now on the two drugs and a note on his records that he needs the two together. I also think he has had a bit of luck because it 'appears' that no particular food is a trigger for him. he did cause me a bit of concern when he started working out at the gym and decided to completely alter his diet to wholegrain foods, lots of eggs, protein, fruit and veg, all of which we were told previously was a no no for him, but so far so good.
I hope the drug combination works for you too and that you get relief for many years.
Oscarsmum70-It is a hard road sometimes and you think the end is never in sight, continuous symptoms, different drugs and then drugs causing side affects(usually pretty minor in the grand scheme of things though) it almost seems like I have woken up from a bad nightmare, I know that it will re-visit one day but for now it is great to see him living his life how it should be led. I assume by your user name you have a child/young adult dealing with this too? It is not easy, especially when trying to get it under control, always one thing after another, always reading and researching, fearing the worst. hoping for something better. Stay strong and positive, don't let the illness define them and know that things can improve :)