Finally some progress with the hospital !

[Lucy_Poppy]

I don't know if any of you remember me , I made a few posts on here as Happyrebel . But i thought I'd do another intro as my account was deleted . :frown: Anyways this is my story so far : Was diagnosed with crohns in May '07 aged 13 following a colonoscopy . Was put on elemental diet , with a NG tube ( pulled it out lol ), asacol ( Im allergic to it ) , Budesonide and prednisolone . Then finally in Dec '07 was put on IV steriods which prompted a year long remmission with no meds ! Went back to school and everything and was fine until last christmas , crohns came back and was put on more Pred , Iv antibiotics and steriods Seems my crohns is steriod resistant ! Tried elemental and LOFFLEX diets but couldnt stick to them Doctors keep offering me azathiaprine , which i keep refusing :S So have been in current flare for about 7 months now , and currently have severe active crohns with no medication .
Sooooooo... went to hospital today . Saw really nice doctor , was in consultants room for an hour ! He seemed really sympathetic although when he tried the old ' Azathiaprine really is a good drug blah ....I just said to him " Look , I'm not going to take azathiaprine ever . Let me just make it clear to you that you can praise it till your blue in the face but I have made my mind up and you cant force me to have it "
then he said about how all drugs have side effects , especially steriods
so i said " Look , i know all drugs have side effects , especially steriods as i was on them for a long time so i know all about the side effects ! " LOL
Anyway , He took out his iphone (!) and asked some questions to see how bad my symptoms where . We worked out that i go to the toilet over 100 times per week ! :awe: and asked me how many times i got stomach pains and i was like erm constantly ? So if you want a number try 60 times an hour , 24 hours in a day 7 days a week xD LOL . He said my symptoms where very severe and i certainly meet the NICE guidelines for Infliximab ( the drug i want to try ) . He said before he gives it to me theres a lots of paperwork to be done , have to apply to my Primary care trust ect and i may have to wait up to 3 months ! Obvioulsly as i am on no meds atm my condition is worsening by the day and he said if things get alot worse i may need to go on steriods again ( i said theres no point ,they didnt work 2 months ago so why should they now ? lol) Or a NG tube feed . Also , if it is a real emergency he can give me Infliximab but he said only if it was an 'organ saving' matter ( presumably he means my bowel lol ). So have to see how that goes .
Also the wheels are in motion to have another colonoscopy ( the last one was 2 years ago ) to see just how bad everything is . I'm actually quite pleased as atleast they will e able to get a clearer idea of how bad it is as they keep saying " oh you look really well " and i just think No i dont ! You should see my insides .

Sorry this is super long , anyone who gets through it deserves a medal . In fact everybody with IBD deserves a medal LOL

 

[My Butt Hurts]

OO! Do I get 2 medals?? One cuz I have IBD and one cuz I made it through?
Glad you reregistered when you got deleted by accident.
Are you able to attend school with your flare as bad at it is, or not so much?
Also, I guess I am confused as to why you refuse to take the azathioprine, but the infliximab is okay?

 

[Lucy_Poppy]

Well , seeing as you twisted my arm MBH I spose you can have two
No , I have not been attending school for 3 months now , I did when my flare was manageable to some extent but now I can barely move off the sofa lol . I have homeschooling 3 times a week , for an hour each time but I'm a bit worried as I was a straight A student and now I dont know how I'll cope of I go back to school in september .
As for the Azathiaprine even I'm not sure why i wont take it lol . I think It's mainly psychological , I read the side effects on the packet and they really freaked me out and I have heard a few horror storys about them . Also , I know some kids my age that Infliximab worked for them , so I think i'm a bit biased xD

 

[NatalieMT]

Well welcome back - sorry to hear your symptoms are a little worse at this point, it sounds like it's pretty bad right now.

I have also done the Elemental diet, twice now infact, first time was for 2 months and I just started again with it 2 weeks ago and I'm currently still on it now. It does help cut down the amount of times you use the bathroom which is a great relief and there isn't any nasty side effects. Although I do know it's sometimes hard to stick with.

Azathioprine perhaps isn't as scary as you might think, although it is a powerful medication, I was on it for quite a while and it did help my symptoms just not enough, I still need to take morphine at home for my pain which isn't right. I did have some side effects although only really nausea and thinning hair, nothing major and it doesn't happen to everyone. Infliximab (plus methotrexate) is what I am next progressing too also and as I understand it too comes with a fair share of potential side effects, but every medication does I guess and it's all about weighing up the pros/cons of your personal situation. I hope when you start getting your infusions that it helps!

Colonoscopy time is never fun, good to know you are pleased about having the procedure atleast, ha ha. I'm having my 3rd one this year in a few weeks, can't say I'm as thrilled as you, but I'm sure it won't be so bad. Let us know how yours goes!

 

[Lucy_Poppy]

Well done to you for sticking to the elemental ! I have had numerous unsuccessful attempts
Azathiaprine might work , but my symptoms are pretty severe atm and I'd rather just go for infliximab .
Gosh your must be really bad atm if you need morphine for pain I have only had it once when i was younger , and not for crohns .
I dont really mind colonoscopys as I am always put under anesthetic for them so i cant even remeber them Cant say i'm looking foward to the prep though :shifty-t: :tongue:

 

[bigtruck]

i've been on azathioprine since 2002 and(touch wood) no problems, don't knock what you haven't tried, this disease doesn't mess and needs treated with whatever works.By the way it's recommened to use azaithioprine in conjunction with remicade, hope things improve soon but you need to accept the help avaliable.:ybatty:

 

[Lucy_Poppy]

Thats great Bigtruck that you have found a drug that works for you . I totally understand what your saying but I dont want to try azathiaprine and surely I do get a choice ?
My doc doesn't want me to use both btw , just remicade as they like to only have one drug 'on the go' at a time so they know which one works .
Just because I wont take ONE drug does not mean I'm not accepting the help available , I am willing to try everything but azathiaprine . Hence why I dont mind having an IV for remicade ...

 

[NatalieMT]

I think the confusion is because infliximab actually has more risky side effects that Azathioprine. It's a 'step up' from azathioprine so to speak. Although I totally agree with you when you say you do have a choice in the matter.

In terms of colonoscopys my first two were under a general, however they actually have said to me at the hospital that it can be more risky and more painful afterwards done this way because they can't move you or you can't tell anyone if something is hurting. Hence why I am having my next under the concious sedation - hope it goes okay!