Never done aforum thing before!

[tommyb]

i am tom im 23 and have Crohn's colitis, been diagnosed for 4 years now and had a really bad time, been in and out of hospital on several different medications including a ton of steroids! Currently having a flare up and feeling crappy!
i am now 3 months down the line with a new drug call 6-mercaptopurine, now sure if its working cus i have pains everday and going to the loo 5 times a day is not fun!

someone please give me some hope is that what i have to expect for the rest of my life>?

thanks

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that you are still having problems

How often are you seeing your doc? Are they aware of the continued problems you are having - do you have an IBD nurse that you can keep in contact with? Also what dosage of the 6-mp are you on? Are you still having regular bloods for this and if so do you know if you levels are still showing inflammation?

I saw your query on the other post regarding Modulen and it might be worth asking about this as it may give the tum a rest and it can also help pinpoint problem foods when this get re-introduced.

There is a lot of helpful info and support here for you so do have a good look around.

AB
xx

 

[tommyb]

hi thanks, yes see him about once every three months. im on 100mg of 6-mp a day but i dont feel like its doing anything, yeah i have an ibd nure but everytime im really bad they just tell me to take steroids, which do sort it for a short while and make me gain weight but im just sick of it. i go for a blood test every 2 weeks to check my levels are ok,

i have spoken to my nurse about modulen diet today and she said that is too drastic for me? and she wants me to go and see a dietitian soon and they will say what they think i need.

do u think the diet would work for me? is it on prescription? or do i need to pay for it?
thanks

 

[Angrybird]

I think it is done on prescription, have you got a pre-pay certificate? These are really handy if you are on more than one med. When are you next due to see the doc? I think it nees to be made clear to your team that you are not happy to just keep popping the steroids especially as it only sorts things short term for you.

 

[David]

Hi Tom and welcome!

I'm sorry you're having a tough time of it

I don't think a Modulen diet is too drastic for you. Yes, they can be hard to stick to, but they can help you gain remission without all the harsh side effects of the steroids. If you want to try the Modulen, fight for it.

I wish you all the best!