Hey Kazygirl I have colitis ( pancolitis ) and smoked lightly since my teens , every time i have tried to stop i have had problems with my colitis - i managed to cut down to one a day and had few...
Hi Can anyone tell me if its okay to use Lactoferrin It seems to get rid of parasites / bugs . anti - bacterial , anti -fungal but im a little confused by some of the medical jargon surrounding...
I thought any alcohol / and also any carbon dioxide was bad for us ? although i do sometimes have a diet coke . Does this mean i can drink lager too ? !...
well i managed to get to the doctors and ... apparently most of the vaccinations for hep a , hep b , tetanus , malaria are not live and therefore safe for us on meds so if anyone else is going away...
Hi Has anyone recently travelled abroad and needed to have vaccinations ? My IBD nurse has told me that i cant have any live vaccinations and i wondered if there ARE any that are not , also what does...
Do you feel tired ? , are you generally well when did you start taking the pred again ? .. maybe it hasnt kicked in yet what dose of aza are you taking , have you recently started taking this ? if im...
hey builttoride .. ive just seen your post about being in the uk and only having one shot at remicade . Where i am in Berks they put you on a maintenance dose and can get at least 2 years worth of...
When i had my first infusion ( via a & e ) i had a cold and they werent concerned at all . although each time i go now they do a pee test for infection , so i guess if you clear that then you...
Ive just had my 3rd infusion ( 8 weeks after frontloading sessions ) and although it seemed to make a difference to my stools , I seem to have lots of gas and slightly strange feelings in my bowel....
oh Okay silly question perhaps , but do you know how they check how you're metabolizing it ? I get regular blood tests , i.e ESR , FBC , Bone Profile , U & E Creatine , CRP and Liver would it be...
wow i havn't been on here for a while but im glad i did today and read about the dosage I was on Aza for a few months .. went from 25 to 75 but only had a few weeks at 75 before my docs and IBD nurse...
I often take longer to taper down than the gi suggests and when i go back to see him and report what dosage im on he never objects .. I also ask for some 2.5 mg pills to make the tapering as smooth...
Hi , I drink 1 or 2 ensure a day and was doing so whilst flaring badly a few months ago .... back then i drank ensure much more slowly and was sipping water at the same time. I also have Modulen IBD(...
thanks ... i have since read a tiny more about it and it seems azathioprine gets broken down into mercaptopurine . But thats as far as they go in explanation . Im hoping i can try 6mp and it wont...
Hi Can somebody please explain or send me a link with detailed information about the difference between azathioprine ( Imuran ) and 6mp .. Im sure i have read somewhere that the body has to do less...
ive been to the doctors recently after having blood tests and he was concerned and confused as my ALT was high and he said this was due to inflamed liver reading your posts about having pain in the...
I have been bloating for ages it seems .. gone from 40mg pred to 20mg and evening meals ( largest meal of the day for me ) make me look like im storing a football ! i get to the point im so bloated i...
When i went in for my 2nd infusion i was asked lots of questions about my health and had to fill out a check list to say i hadnt had any infections / coughing etc etc they did say that certain things...
I have been having Inlifimab ( remivade ) infusions and at the same time have started azathiprine ( 75mg ) for a flareup . these meds seem to have been working great , especially the infliximab , and...
mommdisme , thats interesting ... i guess it is then very important to have a perfectly functioning liver to help the remicade work best ? .. have you read this on the net anywhere , ive been...
Hi I was on antibiotics for a week for the throat , but i didnt want to because it meant i had to wait for the next infusion which was due .. so it put that off by another week . it didnt quite clear...
HI thats interesting .... i had my second infusion 7 days ago , also have a sore throat ( white spots, might be yeast infection ) , getting headached and on 30mg of prednisolone i did have a throat...
Hi I also have pancolitis and always on the lookout for diet ideas and information . so far i have only recently learned that white rice and white bread seem to be commonly used when having problems....
Hi Maybe i was lucky but the remicade had an almost instant affect with me and i felt a huge difference the next day , although i was tired and weak - my crohns felt like it was put on "pause" and...
Hi i havnt heard this product mentioned on here so far , but my GI gave me a suggestion of drinking something from Nestle called Modulen IBD , it is designed for crohns rather than UC , but might be...
Hi I would ALSO love to hear any diet / food suggestions .I'm trying to slowly build back to normal eating and get over a bad flare up. So far all i have been told is to not eat fruit or vegtables...
Hi for years i have had Crohns Pancolitis which i misunderstood and assumed was the same as ulcerative colitis... anyway when i was younger and in remission for 8 years i smoked , each time i gave up...
Hi its interesting you mention the racing heart beat mine feels like that ( i had remicade this time last week ) but when i measure it with a heart monitor, its only 80 bpm .. but it feels like its...
Forgive me please for my lack of knowledge and being nosey ... is this a camera capulse that you took for diagnosis ? , like a colonoscopy without the tube and nasty drink ? , or is it something that...
Hi I have often asked the GI and GP about when best to take asacol , not that it seems to do me much good but i never miss a dose just in case it is helping But do you guys have good experience from...
Hi there Ive recently had to take on azathiprine which is very similar to 6mp and also had my first infusion of remicade due to prednisolone not working anymore .. I also had a year or more of yoyo...
HI there My first dose was 20mg for 3 or 4 weeks then tapered down to 15mg for 3 weeks and so on until no more prednisolone . What dose have you been given ? I often found that i would need to go on...
Hi there good luck with the first infusion i had my first only a few days ago and im now waiting for the letter /date for the next one. I was in hospital having mine and it was late at night when...
Hi Its been a nightmare .. just as you have said about prednisolone normally a few days at 15mg-20mg would sort me out and then i would spend 6 weeks tapering off it , but this time it hasnt touched...
Hi Im currently on a NHS waiting list for my first infusion of remicade / Infliximab and was wondering how quickly it turns things around Im currently on 40mg prednisolone and asacol and cant eat...
Hi mine is flaring up bad at the moment and there is bloody mucus i have quite watery BMs and its difficult to know how much blood is in it how do you get on for the rest of the day ? .. when i was a...
Hi there I wonder if you ould help me please , as you have had some experience in taking remicade I am due to have my first infusion in a few days and have had a slight cold , sometimes coughing up...
Do you guys go to work when you are flaring like this . i.e lots of trips to the bathroom and having to run to it just after youve eaten or even whilst you are eating ? Does anyone find total bed...
Hi Can anone please give me some details of food deit that are well tolerated for a bad flareup Im on steriods and asacol and coidene for the pain but for weeks now im not improving much at all. I...
Hi all Just to say thankyou so much for replying and so soon ! I have just picked them up and was going to try them but will now wait till bedtime ! thankyou again for the help and support...
Hi there I was diagnosed with UC when i was 18 ( nearly 12 years ago now ) and have had a few flare ups which have been brought under control with steriods , but recently I am having trouble getting...