Confused from aus

[rachy]

confused from aus

hey my name is rachael, i am 21 years old, i got told i had crohns last march but they think ive had it for 9 10 years, since then i have had many flare ups which have meant many stays in hospital, i started on 38 tablets a days with many times on roids, i have been finding my illness every hard to come to terms with, such as my social life is different now, and my with my partner its every hard for him to, but for me i not coping every well i dont fully understand the disease my self, i went and seen a new surg 2 weeks ago and now have to see another guy in a couple weeks to talk about trying infliximab and also hurmia, and if they dont work well then surg is one to, i just find all this so very scary, there are many times where i get so upset and just cry cause i wont to learn more about this i wont to no whats happening to my body, i can feel whats happening but dont understand i dont looked it all up on the net but every one is different, i just hope there comes a day where they find a cure, cause i dont no if i can keep going like this forever.. any help or ideas would be great..

 

[Rob]

Welcome to the forum

another Aussie, cool

there are other options other than infliximab (remicade) and humira
I'm sure many people will let you know of different medications they are on that u may be able to bring up with your dr and he/she can discuss them with you

I tried remicade and it didn't work for me actually I got worse, I'm now on a new drug trial and so far so good - touch wood

are you taking any other supliments etc
such as multi vitamin and fish oil etc
they can help too

good luck an keep us posted

 

[rachy]

hey
yeah taking fish oil, others vitamins cause i now have osteporis aswell now
i take 12 tablets of mesalazine daily
3 tablets of immuran
and just came off pred
and also now on somac aswell and they dont seem to be working

 

[Rob]

Somac is for acid reflux etc
helps take away the feeling of wanting to vomit etc

that's a fairly high dose of mesalazine each tab is 500 mg if I remember
if you hav osteoporosis then you should take vitamin D and calcium tablets

 

[rachy]

yeah that is a high dose ive been on that much since i was diagnosed last march so nearly a year ago now, yeah im on 6 calcium tablets and also take 6 vitamin d and also 4 osteo-ezy, but it all does not seem to be working and am sick of them always putting me on steroids, this is y im gettin a 2rd point of view from another surg in 2 weeks as im only 21 and being out on the high dose of med's is not good for me, sooooo over it

 

[Hedgehog]

Hi Rachael,
Sorry you feel a bit despairing. It's horrible to be faced with this, especially at your age. I think it's a good idea to find out as much as you can about Crohn's and its management because it will help you work with your doc to get a treatment plan that works. From talking to other folk it can take a long time to get it right but you will get there is you persist. There are lots of people here to advie you too,
Take care,
Gail
xx