Hi there,
I googled searched Crohn's disease and this website came up. I thought it might be a good idea to just share how I am feeling and dealing with the disease.
My name is Moeed and I have been living with crohn's since the age of 12, however, I was only diagnosed with it in February 2011, when I was 19.
It began with lacerations in my mouth as well as small cuts down below. The seriousness of this varied and due to my age and not really knowing what was going on, I didn't really have any idea how to deal with it. I was given many different treatments and drugs and they seemed to work as everything would clear up for a year or so. It would come and go until the age of 17, when I thought it had all ended.
However, in September 2010, my abdominal area began to feel odd and I noticed that I was visiting the bathroom a lot more than usual. The next few months I spent most of my time on the toilet going between 15-20 times a day. The pain was unbearable. Stomach cramps, bleeding…the works. I slowly became weaker and weaker loosing 11kg between December 2010 and January 2011. I went from being 68kg (a weight I worked hard to get to lol) to 57kg.
I looked like a zombie, the walking dead…I didn’t really realise how bad it was until one of my ‘friends’ said I looked ‘disgusting! ’
Real eye opener, that was.
I slowly became isolated in my own little bubble. My friends became a distant memory and I was very anti-social. This coupled with the steroid I was on at the time, Prednisolone, meant I was very snappy and subject to huge mood swings. I was pretty much turning into golem from lord of the rings. My girlfriend was so worried about the state I was in. I felt so sorry for her…but there was nothing I could do. I managed to put all the weight I lost back on but after I weaned off the steroids I slowly lost all the weight again. After many, MANY, tests I was finally diagnosed with Crohn’s disease and orafacial granulamatosis.
When I was informed it was both a relief as in I knew what I had but a very weird feeling at the same time.
I had a disease…
I was/am a very positive guy so I instantly began to think and ask about ways to get rid/cure it. When I was told I would have it for the rest of my life and that I would only be able to control it, that was a massive reality check.
Since then I have begun infliximab infusions, but I feel no different. Physically I feel ok (still going to the bathroom regularly) but mentally I am a very lost boy. I don’t know what it is, its come to the point where I literally wake up and do nothing all day. No purpose what so ever. I am retaking my second year at university and I cannot afford to mess up again.
Its so hard though, I have work to do, I know I should do it, but I just cant and don’t. I have no motivation what so ever, I feel most comfortable when alone. My diet is appalling. I started taking the modulen shakes but I haven’t noticed anything yet.
I hate the way I am now, I was so outgoing and confident but now that has changed. I am a totally different person compared to the guy my girlfriend liked at first. I thank god I have had her support and she has been an inspiration to me. I would have given up ages ago if it wasn’t for her constantly being there when I needed her.
Shes a rock, a hardcore one...diamond.
I don’t think my parents realise the severity of my illness and I don’t really speak to them much about it. I don’t speak to many people about it at all in fact. I don’t know if this sounds weird or not, but I don’t want to seem weak or vulnerable.
I still have hope that I can get out of this and rebuild but university is intense and I need to progress to the next year. The way things are going at the moment that won’t happen.
As I mentioned, I just hope I can get out of this negative mindset I m in at the moment and get healthy again.
I don’t ask for your pity or to feel sorry for me, but I just needed to get this off my mind. Its alright talking to people but if they haven’t been through the same thing then they will never fully understand.
As I am sure most of you have been through the same thing, I felt I could express myself with people having a better understanding.
I apologise in advance if there are any grammatical inaccuracies, spelling mistakes or bad punctuation. I have not drafted this or even proof read it. I just wrote what I was thinking.
Thanks a lot
Moeed
I googled searched Crohn's disease and this website came up. I thought it might be a good idea to just share how I am feeling and dealing with the disease.
My name is Moeed and I have been living with crohn's since the age of 12, however, I was only diagnosed with it in February 2011, when I was 19.
It began with lacerations in my mouth as well as small cuts down below. The seriousness of this varied and due to my age and not really knowing what was going on, I didn't really have any idea how to deal with it. I was given many different treatments and drugs and they seemed to work as everything would clear up for a year or so. It would come and go until the age of 17, when I thought it had all ended.
However, in September 2010, my abdominal area began to feel odd and I noticed that I was visiting the bathroom a lot more than usual. The next few months I spent most of my time on the toilet going between 15-20 times a day. The pain was unbearable. Stomach cramps, bleeding…the works. I slowly became weaker and weaker loosing 11kg between December 2010 and January 2011. I went from being 68kg (a weight I worked hard to get to lol) to 57kg.
I looked like a zombie, the walking dead…I didn’t really realise how bad it was until one of my ‘friends’ said I looked ‘disgusting! ’
Real eye opener, that was.
I slowly became isolated in my own little bubble. My friends became a distant memory and I was very anti-social. This coupled with the steroid I was on at the time, Prednisolone, meant I was very snappy and subject to huge mood swings. I was pretty much turning into golem from lord of the rings. My girlfriend was so worried about the state I was in. I felt so sorry for her…but there was nothing I could do. I managed to put all the weight I lost back on but after I weaned off the steroids I slowly lost all the weight again. After many, MANY, tests I was finally diagnosed with Crohn’s disease and orafacial granulamatosis.
When I was informed it was both a relief as in I knew what I had but a very weird feeling at the same time.
I had a disease…
I was/am a very positive guy so I instantly began to think and ask about ways to get rid/cure it. When I was told I would have it for the rest of my life and that I would only be able to control it, that was a massive reality check.
Since then I have begun infliximab infusions, but I feel no different. Physically I feel ok (still going to the bathroom regularly) but mentally I am a very lost boy. I don’t know what it is, its come to the point where I literally wake up and do nothing all day. No purpose what so ever. I am retaking my second year at university and I cannot afford to mess up again.
Its so hard though, I have work to do, I know I should do it, but I just cant and don’t. I have no motivation what so ever, I feel most comfortable when alone. My diet is appalling. I started taking the modulen shakes but I haven’t noticed anything yet.
I hate the way I am now, I was so outgoing and confident but now that has changed. I am a totally different person compared to the guy my girlfriend liked at first. I thank god I have had her support and she has been an inspiration to me. I would have given up ages ago if it wasn’t for her constantly being there when I needed her.
Shes a rock, a hardcore one...diamond.
I don’t think my parents realise the severity of my illness and I don’t really speak to them much about it. I don’t speak to many people about it at all in fact. I don’t know if this sounds weird or not, but I don’t want to seem weak or vulnerable.
I still have hope that I can get out of this and rebuild but university is intense and I need to progress to the next year. The way things are going at the moment that won’t happen.
As I mentioned, I just hope I can get out of this negative mindset I m in at the moment and get healthy again.
I don’t ask for your pity or to feel sorry for me, but I just needed to get this off my mind. Its alright talking to people but if they haven’t been through the same thing then they will never fully understand.
As I am sure most of you have been through the same thing, I felt I could express myself with people having a better understanding.
I apologise in advance if there are any grammatical inaccuracies, spelling mistakes or bad punctuation. I have not drafted this or even proof read it. I just wrote what I was thinking.
Thanks a lot
Moeed