Hi this is my first time using anything like this. My family and doctor thought it would be good for me to get in touch with other people like me. Ok, my life with crohns so far has been almost unbearable I don't know how you all cope with it. It first started back in April 2009. I started getting really bad cramps in the lower part of my tummy and because I worked in a pharmacy I self prescribed things over the counter. I went away on holiday to Dorset to our holiday home and while I was there I got a spotty rash all over my chest. I hadn't seen my doctor at this point. It eventually went and I continued to take pills that I bought from work. Then I had to see my doctor because of the pain. He thought it was ibs and gave my buscopan. I have a severe needle phobia and so resisted blood tests. I lived like this for about a year not knowing that it was crohns and everyday it was getting worse. I had to take 6 months off work.
Then in 2010 it got much much worse. I could barely swallow my pills, couldn't eat, could hardly drink, my ankles knees wrists jaw and spine all had swelling and I could noy even walk. I still resisted a blood test simply because I was terrified even though I was in absolute agony. That is how beedle phobic I am. My mum after she had been out to work as a district nurse then came home to care for me. I couldn't do anything for myself. I was seeing my gp weekly by this point as I was at risk of just collapsing. The day he sent me to a&e was the same day that he said my body was beggining to shut down and if I didn't go this would more than likely happen.
I resisted going because I knew there would be needles there. Just before I went into hospital I did manage to have a blood test with a whole tube of emla cream and screaming the surgery down! I was a mess and my bloods showed that. I went into a&e in a wheelchair with my mum who may I add is also my best friend. I had been sent into hospital before now but refused blood tests so they sent me home, I pretended I was fine even though I was half my weight and couldn't walk. One time it took me 20 minutes to crawl up the stairs, I cried through the pain. I know I should have tried to get treatment sooner but no one could force me it had to come from me and I was so terrified. Anyway, in a&e i was seen and actually sent home later that day. I was returning the following day to see my consultant.
The next day i returned with mum and was fitted with a drip, still can't believe we managed that alone! I was given a bed and a couple of hours later sent off for a sigmoidoscopy. I was given pethidine but it didn't work at first and that was the worst experience of this whole horrible journey. The pain i felt while they were doing the test is unbelievable. Mum said she heard me screaming down the corridor i promise you it was the worst pain in the world. They gave me the diagnonsis of crohns then and there. This was in November 2010. I stayed in hospital for 8 days. They gave me i.v steroids, an infliximab infusion amongst so many other pills.
To this day it has never been in remission and I have severe pain everyday. I have just had to stop my azathioprine because i am covered head to hips in a spotty itchy rash again. My consultant wants to do another infliximab infusion but i am so scared. I really feel like nothing will ever work for me and i don't have a life anymore. Thank you for reading my story i really would love to hear from you, Charlotte. P.S - having monthly blood tests now!
Then in 2010 it got much much worse. I could barely swallow my pills, couldn't eat, could hardly drink, my ankles knees wrists jaw and spine all had swelling and I could noy even walk. I still resisted a blood test simply because I was terrified even though I was in absolute agony. That is how beedle phobic I am. My mum after she had been out to work as a district nurse then came home to care for me. I couldn't do anything for myself. I was seeing my gp weekly by this point as I was at risk of just collapsing. The day he sent me to a&e was the same day that he said my body was beggining to shut down and if I didn't go this would more than likely happen.
I resisted going because I knew there would be needles there. Just before I went into hospital I did manage to have a blood test with a whole tube of emla cream and screaming the surgery down! I was a mess and my bloods showed that. I went into a&e in a wheelchair with my mum who may I add is also my best friend. I had been sent into hospital before now but refused blood tests so they sent me home, I pretended I was fine even though I was half my weight and couldn't walk. One time it took me 20 minutes to crawl up the stairs, I cried through the pain. I know I should have tried to get treatment sooner but no one could force me it had to come from me and I was so terrified. Anyway, in a&e i was seen and actually sent home later that day. I was returning the following day to see my consultant.
The next day i returned with mum and was fitted with a drip, still can't believe we managed that alone! I was given a bed and a couple of hours later sent off for a sigmoidoscopy. I was given pethidine but it didn't work at first and that was the worst experience of this whole horrible journey. The pain i felt while they were doing the test is unbelievable. Mum said she heard me screaming down the corridor i promise you it was the worst pain in the world. They gave me the diagnonsis of crohns then and there. This was in November 2010. I stayed in hospital for 8 days. They gave me i.v steroids, an infliximab infusion amongst so many other pills.
To this day it has never been in remission and I have severe pain everyday. I have just had to stop my azathioprine because i am covered head to hips in a spotty itchy rash again. My consultant wants to do another infliximab infusion but i am so scared. I really feel like nothing will ever work for me and i don't have a life anymore. Thank you for reading my story i really would love to hear from you, Charlotte. P.S - having monthly blood tests now!
