Mewbie

[hainman]

mewbie

hi all.
im new here and would like to share a wee bit about my situation,i was diagnosed with CD about 3 years ago,not long after diagnosis i had to have an op(double resection)because the crohns was so aggresive,i have been ok for a bit then a flare up starts again,i noticed that i have to stay away from fibre ie brown bread wholemeal products,chillie foods especiallly and for some reason i cant eat any kind of cheese without having to rush to the loo.i was prescribed azathioprine but it didnt realy work so tried methatrexate and again that didnt work so im currently on imflixamab(remicade) and prednisolone steriods but tryin to tapper down of them,currently at 2 mg and my symptoms have started again,ie loads of BM and blood,everytime i try to come of steriods i end up going back to square one,its a bummer ha ha,way things are looking i dont have many more options left,GI nurse mentioned humira but i need to get of steriods,or the last resort is removing my small bowel and going for a stoma bag,would be nice to hear from people in similar situation as myself,
hail hail H

 

[Nyx]

I have a bag! It's not that bad....it's kind of great actually

Welcome to the forum, and I do hope the meds work for you, as surgery really is a last resort.

 

[hainman]

bags

hi nyx.
thanks for the reply and the welcome,ive heard a few ppl say thet when you get the bag its better ie can have normal life(to an extent),are you still able to go swimming??do you eat what you want now??ive had to go back up to 5mg of prednisolone to see if it stops the sudden and aggresive diahorrea.its startin to drive me nuts again.i think my bowel seems to have went abit mushie again .starting to notice the bloody mucusy BM again.now im comin of the pred.seems to be whats keepin me on a level keel.anyhoo enough of ma moaning,was good to here from you.H x

 

[beth]

Welcome Hainman.

 

[Nyx]

I can do everything I used to do. I eat what I want, drink what I want, and do what I want I feel like I did pre-Crohn's.

 

[Entchen]

Welcome to the forum!

 

[Astra]

Hi hainman
and welcome

poor you, I know where you're coming from with the Pred taper! Every time I tapered, I had terrible D too. so I kept upping the dose, then tapered again, I've managed to come off completely now, but it took 4 months!
Hope the Remi does the trick. There is a thread on here about Remi.
good luck and any questions, just shoot!
lotsa luv
Joan xxx

 

[hainman]

hi joan.
pleased to meet you.thats great news that you managed to get of the steriods,fingers crossed my time will come,this happened the last time i tried to taper down too,its bizare that as soon as im of them or nearly of them my symptoms start right away,its a pain in the ass lol,oo: got to wait a week to talk to te GI nurse as shes on holiday,good to talk to you,:ycool: H

 

[hainman]

Hi Kelly.
Pleadse To Meet You,how Are Your Smyptoms??
H

 

[hainman]

Hi NYX,
That Sounds Grand,hopefully I Dont Need To Go Down That Road For A While But If I Do Its Encouraging That I Can Get Back To A Semi-decent Lifestyle,i Miss A Big Mac Like Crazy Lol,talk To Ya Soon, H

 

[hainman]

HI JOAN.
I MEANT TO ASK YOU WHAT STAGE DID YOU TAPER DOWN THE PRED,I WENT 20-15-10 THEN DOWN 1mg EACH WEEK.BUT DIDNT GET PASSED 5mg LAST TIME AND GOT TO 2mg THIS TIME B4 SYMPTOMS CAME BACK,WENT BACK UPTO 5mg AND STARTIN TO FEEL BETTER ALREADY BUT IDEALY WOULD LIKE TO GET OF THEM COMPLETLY,TTFN H

 

[Astra]

Hi H

I started on 40mg in Jan for 28 days, then 35, 30, 25, 20, 15mg each week
when I got to 15mg all hell broke loose, so I upped it to 20mg for 2 weeks, then tapered it again by 5mg per week til zero, I think the secret is high doses for at least 2 months to blitz any inflammation, then taper by 5mg, but everyone is different, the beauty of this drug, is that you can up the dose whenever you flare, I know it takes ages, but worth it in the end, I think I'm in remission and going back to work tomorrow after being off for 4 months! wish me luck!!
xx

 

[hainman]

HI JOAN.
I KNOW HOW YOU FEEL,ITS HORRIBLE WHEN YOU THINK ALL IS WELL THEN BANG YOUR UP THE CREEK WAE OUT YOUR PADDLE.THINK I WAS ON ABOUT 20 THEN IT WAS TAPER DOWN 5 EACH WEEK TILL I GOT TO 10 THEN IT WAS DOWN 1 EACH WEEK BUT GOT TO 3 AND HAD FLARE UP AGAIN(BACK TO THE BLOODY BM)oo: NEED TO SPEAK TO MA GI NURSE WHO INTURN WILL SPEAK TO MY SPEACIALIST TO SEE WHAT THE NEXT MOVE IS,ITS A BUMMER(PARDON THE PUN).IT JUST MEANS IM RESTRICTED TO THE HOUSE AGAIN AND CANT TAKE MY 2 1/2 YEAR OLD DAUGHTER OUT,ARGH.UNFORTUNATLY I DONT FIT INTO HER SWIMMING NAPPIES LOL MIGHT TRY THE POLLY BAG APPROACH LOL ANYHOO TALK TO YOU SOON JOAN BBYYYYEEEEE H:thumright:

 

[hainman]

honey.

hi guys.thats me off the imflixamab as i cant get if the steriods so the powers at be think it aint doin the job,kinda think that too as i would have thought i would get of the roids with taking 2 dif immune suppresants so im getting put forward for humira but just gotta wait to see if i get it,they want to do the op and remove the bowel with the stoma bag but id rather try all my options 1st,anyhoo has anyone heard of or tried a thing called manuka honey,its from OZ and NEW ZEALAND,seems to have amazing healing properties but mega expensive,just thought id run the idea past you guys as im thinking of trying it,no pain no gain!!!!:cool2: