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My story and my fight with crohns

My names Trevor, I'm 27 from the uk and I've been a crohns sufferer since I was 13, it's been an uphill struggle really, luckily I was diagnosed early so I had verious medications one of which was rank lol. Moduline ibd it was called. I came off that cos it was just disgusting, I'm a gym instructor recently qualified, obviously I want the image to go with the job as I will eventually progress to PT. Recently my consultant took me off my every 6 week infusion which was wonderful it was keeping me healthy and on track and I even put on weight because I had such a good appetite, so u can imagine coming off it was a risk that had to be taken cos I can't be on meds for the rest of my life, at this point I was the heaviest I'd ever weighed at 13 st 5. And I was starting to shape up and become a lot healthier, so coming off it within a month I lost a stone and went in to relapse so u can imagine my frustration, saw my consultant again and he's putting me back on the infusions ( involving a drip of a kind and needles, not a fan but got used to them) so hopefully I will get better soon put the weight back on and my career can kick start, an old form tutor of mine back at secondary school had crohns and he was in remission for years and still is I think, I wonder what his secret is, but it's different in individuals cases, what works for one patient may not necessarily work for another, thanks for sharing your stories I hope u get alit out of mine :)
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi Tcdogg and welcome to the forum! :D

I'm sorry to hear you aren't doing well again. :( What medication was your infusion, was it Remicade? Why did your doctor take you off of it? Its very likely that the medication is what was keeping you well so stopping it doesn't make sense to me. Crohn's disease requires some sort of treatment and those treatments can range from diet to medication or preferably a combination of diet, exercise, supplements and medication. So it sounds like you did find something that was working wonders for you but you were taken off of it. I hope it works for you the way it did before.

Thank you for sharing your story. Please keep us posted on how you're doing. :)
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community. It's so frustrating to me that people in the UK are being taken off their biologics once they start to do well. All it will do is lead to relapse like you experienced. Whoever wrote that recommendation for the way to treat Crohn's needs to be fired.

Anyway, I hope you get back to doing well soon. And again, welcome. We're glad you found your way here.
 

nogutsnoglory

Moderator
Im assuming you are on Remicade based on your description of iV drips. I hope this helps bring you back into remission so you can begin to live a normal life again.
 
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