Hello all,
My name is Jordan, i'm 21 years old. I was diagnosed with Crohns disease and Orofacial Granulomatosis when I was 14. I didn't really understand what was going on at the time, I just sat in doctors offices and nodded my head whilst the Dr's explained everything to my parents. I was put on a liquid diet of Modulen for two months and then followed an elimination diet. This saw the swelling of my lips go down slightly, but not the whole way down. After three or four years of following the diet I started eating whatever I wanted again, which didn't appear to affect me in the slightest.
I should mention that as far as i'm aware i'd never exhibited any GI symptoms, the entire thing revolved around my swollen lips. Perhaps it led on from my parents being the ones given all the information when I was younger but i've always ignored Crohn's, in complete denial because I was scared of what I might find out. I was worried if I looked into it i'd find out that people with Crohns don't live past 25 or something to that effect. All of a sudden this summer, I started thinking about Crohns, for the first time since I was maybe 16, I went to shut it out like I always have done before and couldn't, all of a sudden I had a feeling like someone had thrown a bucket of ice water over me and I was scared.
I've been following this forum as a guest for the last month or two, avoiding becoming a member because once again that would be like admitting I have a problem. I've refused to talk about Crohns with any of my nearest and dearest for the same reasons over the years. I've always heard horror storries about friends of friends with Crohns and thought, 'I can't have that, can I? I'm fine'. Recently i've noticed that my stomach feels unsettled a lot of the time, making noises a lot, bloating and gas ect. My lips are still swollen, no more than usual. My stools feel a little loose, nothing i'd call D though, one BM a day (picked up a lot of lingo from this forum:ysmile. I went to see my GP about this, he said it was probably IBS and told me to eat more Fibre, which i've done. I've always eaten a fairly high fibre diet anyway, I eat a lot of nuts and drink a lot of alchohol too, once again with no GI symptoms.
I'm wondering if these symptoms have simply occured as a result of my recent anxiety and finally beggining to face my fear and learn about Crohns, it seems coincidental that I should flare up for the first time ever at the exact same time that I start worrying about Crohns? Is it possible to only ever exhibit Orofacial symptoms of this illness? Will I develop GI symptoms later on?
Of course I understand that you're not doctors, but you all seem fairly well informed. I've asked my doctor to refer me to a GI which he's done. But I can't take it any more, I can't stand doing 40+ google searches a day and reading through forums and articles.
I don't even really know what the point of this post was. I was just going to introduce myself, but that all just blurted out. I appreciate that none of you can give me medical advice, I suppose i'm just scared, I feel isolated and no one I know can give me any answers.
Nice to meet you all anyway, I know very little about CD and UC but am more than happy to chat to anyone who wants a shoulder to cry on. Your sense of community, positivity and willingness to help each other is inspiring.
Jordan
My name is Jordan, i'm 21 years old. I was diagnosed with Crohns disease and Orofacial Granulomatosis when I was 14. I didn't really understand what was going on at the time, I just sat in doctors offices and nodded my head whilst the Dr's explained everything to my parents. I was put on a liquid diet of Modulen for two months and then followed an elimination diet. This saw the swelling of my lips go down slightly, but not the whole way down. After three or four years of following the diet I started eating whatever I wanted again, which didn't appear to affect me in the slightest.
I should mention that as far as i'm aware i'd never exhibited any GI symptoms, the entire thing revolved around my swollen lips. Perhaps it led on from my parents being the ones given all the information when I was younger but i've always ignored Crohn's, in complete denial because I was scared of what I might find out. I was worried if I looked into it i'd find out that people with Crohns don't live past 25 or something to that effect. All of a sudden this summer, I started thinking about Crohns, for the first time since I was maybe 16, I went to shut it out like I always have done before and couldn't, all of a sudden I had a feeling like someone had thrown a bucket of ice water over me and I was scared.
I've been following this forum as a guest for the last month or two, avoiding becoming a member because once again that would be like admitting I have a problem. I've refused to talk about Crohns with any of my nearest and dearest for the same reasons over the years. I've always heard horror storries about friends of friends with Crohns and thought, 'I can't have that, can I? I'm fine'. Recently i've noticed that my stomach feels unsettled a lot of the time, making noises a lot, bloating and gas ect. My lips are still swollen, no more than usual. My stools feel a little loose, nothing i'd call D though, one BM a day (picked up a lot of lingo from this forum:ysmile. I went to see my GP about this, he said it was probably IBS and told me to eat more Fibre, which i've done. I've always eaten a fairly high fibre diet anyway, I eat a lot of nuts and drink a lot of alchohol too, once again with no GI symptoms.
I'm wondering if these symptoms have simply occured as a result of my recent anxiety and finally beggining to face my fear and learn about Crohns, it seems coincidental that I should flare up for the first time ever at the exact same time that I start worrying about Crohns? Is it possible to only ever exhibit Orofacial symptoms of this illness? Will I develop GI symptoms later on?
Of course I understand that you're not doctors, but you all seem fairly well informed. I've asked my doctor to refer me to a GI which he's done. But I can't take it any more, I can't stand doing 40+ google searches a day and reading through forums and articles.
I don't even really know what the point of this post was. I was just going to introduce myself, but that all just blurted out. I appreciate that none of you can give me medical advice, I suppose i'm just scared, I feel isolated and no one I know can give me any answers.
Nice to meet you all anyway, I know very little about CD and UC but am more than happy to chat to anyone who wants a shoulder to cry on. Your sense of community, positivity and willingness to help each other is inspiring.
Jordan