Search results

Thanks everyone, some really great info there. It's just nice to know other people are in the same boat as well. I'm leaning towards going with the stoma. My disease isn't acute at the moment but it's just bloody relentless. I don't know whether I would be looking at an ileostomy or a...

Hi, I have persistent crohn's of the rectum and lower colon for the last 30 years... It wasn't much of a problem for the first 20 but the last decade has been tedious to say the least! Although I have recovered from fistulae and severe disease my crohn's is still active in the moderate range...

Hey Guys, I've stopped my involvement with the Vedo trial. I had started to get worse and decided that I would take some Predfoam which took me out of the study. In general I think I did get some relief initially from the drug but that after 3 infusions it was working for less time. And I was...

Cheers Rob! I think you're in a lot worse place than me at the moment. I had severe symptoms up to 24 months ago including fistulae but the steroids brought that back to moderate. Just gotta get off the steroids! Hang in there, buddy. I'm sure that you'll get some relief from Vedo!

Hey Rob, I'm on every 4 weeks as well. Because I got registered as a fail, there was no placebo for me. I reckon you might be the same... I think if they see a full recovery they want to prove that that recovery was from the drug. Hence the placebo. Interesting what you say about the 4th or...

I was on 40mg orally for several months and then a maintenace of 10mg for about 2 years. I took predfoam then for three years - which are 20mg enemas. Why do you ask? And Rob - hope it goes well for you. I am definitely improved again after my third dose. I just don't know for how long!

Hey Guys, Just to give you an update on my personal experience with Vedolimuzab. I felt good for a couple of weeks after my second dose. However, I had a flare then and kinda felt like the drug was wearing off then for the ensuing 10 days. I got registered as a non-responder with the trial as...

Rob: Welcome to the gang! Fantastic to hear that you got on board. I really hope it works out for you. Personally, I am doing well at the moment. Going for my third infusion next wednesday - it could be one of three : my current dose, a lower dose or a placebo. I'm off the 'roids for the first...

Hey Sue, You need to be very careful with any potential abcesses... you don't want to have them develop into fistulae. I had a hard time with them over a couple of years. And to show you that great minds think alike... I noticed something over the weekend on my bum which was sore and felt like...

Hey there... I felt tired as well after both doses so I think it maybe a reaction of some sort. There's gonna be something happening anyway! I'm 2 weeks into my second dose. I feel o.k... A little bit constipated again which I don't enjoy because it always ends badly! I still think I am getting...

Hey there, Just thought I would give you an update after my flare last week. I was pretty constipated when I started the Vedo and then spectacularly not! 35 trips to the toilet over a 36 hour period. I have definitely levelled out now and I'm feeling generally well. The drug is definitely...

Hey Rob, Fingers crossed the you get on the Vedo and it works for you. I've tried Humira which had no effect really whereas Vedo has been up and down but it has definitely had an effect. I just have to wait and see. Have you tried any foam pred enemas (Predfoam here in Ireland) considering the...

Hey everyone, Just going to temper the optimism of my last post a little bit. I've had a couple of bad days in between ... 20 bm's followed by 10 bm's. Not great really but I had been feeling constipated and I suppose it had to break some time. The only positive is I hate that constipated...

Vedo Update - two weeks in! Hi, Just thought I'd give you an update on how I am feeling on the Vedolimuzab. I got my first infusion 13 days ago - I am in again tomorrow for no. 2. I had no allergic reactions to the initial infusion. For the first week I was pretty exhausted. I also started...

Hey Rob, Sounds like you're not in a great place at the moment. I really hope you feel well soon. The Vedo is definitely worth trying but it might take a couple of weeks to get on it. As ever with these things, it is very difficult to work out how successful it has been up to now. Hopefully...

Hey Everyone, I just started the Vedolizumab trial yesterday. I got my first infusion and other than losing a bit of sleep last night I haven't noticed too much in the way of side effects. I'll keep you up to date with my progression on this thread. I know we all want to hear some good news...

Hi there, I used to work as an IT consultant - I would head off at the drop of a hat for jobs - I worked in Dublin, London, Amsterdam, Sydney, Seoul etc. And then I got laid seriously low by Crohn's - I ended up in bed for the best part of a year unable to work. I had no income and didn't...

Hey there Steve, I'm in Dublin... I'm going in for my initial screening for the trial on Wednesday. I've been told that there is no placebo being used by the hospital. There will be two doses and I will not know which one I am on... I'll keep you posted with any news! Apparently, the drug has...

Hi Ezio, I'm due to start Vedo in the next three weeks. What have your experiences been so far? Is anyone doing well on the drug?

hmmm... not so sure about the helminths. i know it is all down to personal experience but i had a go at them a couple of years ago. it's very expensive - i spent 3 or 4 thousand aussie dollars at the time... with no discernible effect. they were being made by a german company at the time and...