Hi my names Nathan and this is my story :)!

[Oxycontin]

Hey there all my fellow crohns suffers my names nathan and I just joined the forum ten minutes ago: I will introduce myself:-
I am a 17 year old male that is doing year 12 at school in Sydney I was diagnosed with Crohn's 1/9/13 age 16, I have been affected by crohns my whole life as I grew up with my father having crohns which he has also had since he was 16 which is hard to have a sick father, my disease seems to be uncontrolled and in a constant flair, I have tried all the general first defence crohns medications and all have failed, to control my pain I have slowly gone up the painkiller ladder paraceitimol , codiene 15/500 ,panadiene forte 30/500 ,endone 5mg ,oxycontin 20mg, now finally getting relief on 2x oxycontin 20mg + 2x endone 5mg which works and keeps my pain under control. My Crohns is did river as moderate, but for me it feels very sever but I have been told it is only moderate by my doctors. I see three doctors A GP who gives me all my scripts monthly , A Gastroenterologist who I see monthly and a adolescent psyciatrist who I have weekly sessions with to treat my Panic disorder and General anxiety disorder. The maker crohns symptoms that I suffer from in order from most to least severe are Pain,Nausia,fatigue aswell as anxiety. I many vitamin supplements and I have a dairy free and vegetarian diet. So please feel free to post a reply or message me and say hello !
Take care everyone
Oh and P.s My gastrointoroligist is Dr. Bolon and I highly recommend him

 

[DJW]

Hi Nathan and welcome.

What is the treatment plan going forward?

 

[Oxycontin]

Hi DJ,
I am currently taking Salafalk (CD) Budenafalk (CD) Prozac (Anxiety) Oxycontin (pain) Endone (break through pain) my GI wants to send me to hospital to have infusions, but last time I went and saw him he just said that he wanted me to wait longer for the treatment and he just gave me painkillers ?!

 

[Roy1989]

Hey Nathan, what were the infusions he was gonna do? Remicade?

Also, where is your Crohn's most active? What is causing / where is the pain? Had any surgery?

(Bloody 21 questions over here!)

 

[Oxycontin]

Hi Roy,
My GI said I had a choice inbertween two biologicals ( not sure what they are ) he just said i had a choice between 1. Go to hospital and have an infusion that's half human and half mouse or 2. Inject myself at home with a syringe and the biological was fully human. My crohns is it the terminal iliam and my crohns pain is sever on the lower right hand side.
Take care
nathan

 

[Roy1989]

Aw yeah, sounds like Humira and Remicade. My gastro wants me on humira next. LRQ is exactly where my bad pain is too (quite common in Crohn's really).

Incidentally, the Doctor who did my first colonoscopy reported on it wrong and said my stricture was in the teeminal illieum too.. subsequently, my treating gastro (Dr Sean Griffin, would highly recomend him too!) Has been up inside me and confirmed that the TI is actually fine, It's the ascending colon around the cecum area where my stricture and recurring obstruction is.

Anyway, welcome to the forums! Give us a shout if you ever need a chat or whatever. I'm in the Sydney are too so maybe I can offer some Crohn's friendly tips for you. Although, maybe your dad will have probably already had that covered!

Whilst I wouldn't wish the disease on anyone, it'd be bloody handy to have your parent already know so much about your disease... wish my old man would learn a bit more about it .

Andgood luck with your year 12 studies mate!

 

[DustyKat]

Hey Nathan,

I’m sorry to hear of all you are going through.

I must say, the treatment plan you are on now seems very mild considering your level of symptoms and I am not sure what the idea of waiting and watching is?? When are next due to see the GI?

Also, are you planning to go to university? If so has the school assisted you with applying for the EAS (Educational Access Scheme)?

Dusty. xxx

 

[Oxycontin]

I have tried almost all the treatments and unfortunately none have been successful the medications I have tried that have failed are:
50mg Prendisone
1500 Slalafalk
75mg Mercapterpurine
6mg Budenafalk
These all failed the only thing that seems to take away the horrible constant pain are pain killers which I take 2x oxycontin 20mg and upto 3x endone 5mg for breakthrough pain. They are the only thing that helps I don't like being on pain medications like my doctor told me to be carefull because I'm only 17 and they can be habit forming and I asked him if he thought I was addicted and he said no just be carefull. So it's really tough for me at present.

Regards Nathan

 

[Oxycontin]

Hello Roy,
Good to talk to somone that lives around Sydney I get some truely horribly sharp and intense Lower right abdominal pain, from what I have read up about here on crohns forum I think I consider myself very lucky as I seem by chance to have gotten a GI that is actaully rather generouse with the pain medications, and from what I have read GI like that are few and far between!! I have heard people on crohns fprum say that there GI doesn't believe in pain medications or that they just cover up the symptoms and do not treat the cause or they say they give you constipation so they won't give there patients any I also have a very sympathetic and generous GP so I guess that I am 2 times lucky as I have heard a lot of border stories on this forum of CD patients not being given any pain relief by there GI, I am very lucky that I have two caring doctors that will treat my pain especially since I am only 17 so that's a good thing!!! Apparently a lot of young people they won't give opiate painkillers too

 

[leezapeza]

Hi anthem I'm ya neighbor from across the ditch invercargill New Zealand my Crohn's is I'm the illiem part too I'm on predisone and tapering I feel not to too too bad but yeah I've had to start taking panodol again for the pain I'm a real newbie I just found out I had it at the start if the month I thought it was my appendix but they done a ct scan showed an absess with inflammation I wasn't expecting that hope I get better )