Hi everyone.
I'm quite excited about being on here,all new but hoping I get to make so me new chums
My name is Hannah, I'm 29 years old and live in Portsmouth UK with my hubster (married for 6 yrs) my beautiful 4 yr old daughter Ruby,and our king charles spaniel Milo. I was first diagnosed with Crohns disease in 2004 after a rather shocking first attack,to be honest I'd had symptoms for a few yrs but just put it down to a nasty IBS. I was due to go to Florida and a couple of weeks before and thought I had caught a tummy bug with a nasty bout of diarrhoea,that was untill i started getting excrutiating pain in my feet and up my legs,a few days later I started passing blood,I couldn't eat and was loosing weight so took myself off to the dr,they wanted me to cancel my holiday and get me to see a gastro dr,but me bring young and stubborn refused to cancel my hols!!! Seeing Mickey Mouse was far more important,so silly me took myself on an 8 hr flight to Orlando! Needless to say the holiday was a disaster I was in agony the blood passing got worse and I couldn't walk at all,in fact my poor now husband spent 13 days pushing a rather drugged up Hannah round Disney in a wheelchair! Upon my return I got sent straight to the local gastro unit where they did a colonoscopy and I got a telling off for going away in the first place,straight away they diagnosed Crohns and I started my life as a Crohnie.
The first few years I plodded on with the odd small flare but all in all I was lucky,even during my pregnancy I only had 1 bad week,it was only after Ruby was born the crohns really decided to show me what it can do, Roo was five months old and I started getting pains in my feet/ankles (going up and down stairs on your bum isn't ideal with a newborn) then the explosive diarrhoea and gut pain started,the dr did a blood test and later on that same day at home my dr called, saying the blood lab had contacted the surgery with my results and they needed to get me straight to the hospital, my inflammation markers were 385!!!!! They pumped me full of steroids and fluids and put me on a fortisip diet for 2 weeks (yummy!) with x rays and bloods everyday, after 2 weeks I used my baby to emotionally bribe the drs into letting me go home,so I went home with my new enemies PREDNISOLONE!! But after 3 weeks the pain in my gut and ankles came back I knew where I was headed so my hubby packed me a bag and we went to my GP who took one look at me and got on the phone to the hospital,this time it was worse,the steroids weren't working and I didn't know at the time but my lrg bowel was so inflammed it was close to bursting,before I knew what was happening a team of surgeons came in and announced that they would be removing my lrg bowel the next day,I was in so much pain I didn't really take it in and actually didn't really care!! later that day though in walked my saviour,to this day I wish i could remember his name,a gastro consultant from the USA came in to see me and started talking about infliximab (remicade) it had been used a fair bit in the states but had only recently started being used in the UK (at that time) the other consultants/surgeons weren't keen saying i was too poorly and the the best option was surgery,but this Dr kept pushing and eventually they agreed they would give me 1 infusion but if it had made no difference in 24 hrs then the surgery would go ahead (i was marked up and the stoma nurse did her chat and everything) I had resigned myself that the following day i would be bowel-less!!! BUT miracle of miracles over the following day i slightly improved,so they said they would delay the surgery another day and give me another infusion, well to cut a long story short (too late I know!)the infliximab worked and the surgeons put down their scalpels. It saved my bowel and has given me a bit longer with it,I've been told that the op is inevitable at some point, it just depends how long the drugs can keep me well! Fingers crossed a bit longer.
So the last few years the crohns although lingering around has reasonably behaved itself! whoop whoop, the bad news for me being the artritis that came hand in hand with it has stayed and got worse, so i now have constant rheumatoid arthritis,and ankylosing spondylitis, which is a struggle as my spine is fusing , it feels like i have to do everything with a straight back (it looks odd) and i have pain everyday in my feet ankes and knees, i've also just had an X ray to confirm sacro illiitis in my pelvis and hips,i'm having to rely on walking aids and wheelchairs more these days,I feel like an 80 yr old trapped in a 20 somethings body!!!!!
So at present I take azathioprine,pentasa,remicade am currently having IV methylprednisone infusions (i've had 2 in 4 days and having another tommorrow) and i start methatrexate in about a week when my chest x ray comes back.
Sorry for rambling (once I start I can't stop) so thats me,lol. I'd love to hear from ANYONE for a chat or a vent! I hope eveyone is well and I look forward to hearing from you.
Lots of love.
Hannah xxxx:heart:
I'm quite excited about being on here,all new but hoping I get to make so me new chums
My name is Hannah, I'm 29 years old and live in Portsmouth UK with my hubster (married for 6 yrs) my beautiful 4 yr old daughter Ruby,and our king charles spaniel Milo. I was first diagnosed with Crohns disease in 2004 after a rather shocking first attack,to be honest I'd had symptoms for a few yrs but just put it down to a nasty IBS. I was due to go to Florida and a couple of weeks before and thought I had caught a tummy bug with a nasty bout of diarrhoea,that was untill i started getting excrutiating pain in my feet and up my legs,a few days later I started passing blood,I couldn't eat and was loosing weight so took myself off to the dr,they wanted me to cancel my holiday and get me to see a gastro dr,but me bring young and stubborn refused to cancel my hols!!! Seeing Mickey Mouse was far more important,so silly me took myself on an 8 hr flight to Orlando! Needless to say the holiday was a disaster I was in agony the blood passing got worse and I couldn't walk at all,in fact my poor now husband spent 13 days pushing a rather drugged up Hannah round Disney in a wheelchair! Upon my return I got sent straight to the local gastro unit where they did a colonoscopy and I got a telling off for going away in the first place,straight away they diagnosed Crohns and I started my life as a Crohnie.
The first few years I plodded on with the odd small flare but all in all I was lucky,even during my pregnancy I only had 1 bad week,it was only after Ruby was born the crohns really decided to show me what it can do, Roo was five months old and I started getting pains in my feet/ankles (going up and down stairs on your bum isn't ideal with a newborn) then the explosive diarrhoea and gut pain started,the dr did a blood test and later on that same day at home my dr called, saying the blood lab had contacted the surgery with my results and they needed to get me straight to the hospital, my inflammation markers were 385!!!!! They pumped me full of steroids and fluids and put me on a fortisip diet for 2 weeks (yummy!) with x rays and bloods everyday, after 2 weeks I used my baby to emotionally bribe the drs into letting me go home,so I went home with my new enemies PREDNISOLONE!! But after 3 weeks the pain in my gut and ankles came back I knew where I was headed so my hubby packed me a bag and we went to my GP who took one look at me and got on the phone to the hospital,this time it was worse,the steroids weren't working and I didn't know at the time but my lrg bowel was so inflammed it was close to bursting,before I knew what was happening a team of surgeons came in and announced that they would be removing my lrg bowel the next day,I was in so much pain I didn't really take it in and actually didn't really care!! later that day though in walked my saviour,to this day I wish i could remember his name,a gastro consultant from the USA came in to see me and started talking about infliximab (remicade) it had been used a fair bit in the states but had only recently started being used in the UK (at that time) the other consultants/surgeons weren't keen saying i was too poorly and the the best option was surgery,but this Dr kept pushing and eventually they agreed they would give me 1 infusion but if it had made no difference in 24 hrs then the surgery would go ahead (i was marked up and the stoma nurse did her chat and everything) I had resigned myself that the following day i would be bowel-less!!! BUT miracle of miracles over the following day i slightly improved,so they said they would delay the surgery another day and give me another infusion, well to cut a long story short (too late I know!)the infliximab worked and the surgeons put down their scalpels. It saved my bowel and has given me a bit longer with it,I've been told that the op is inevitable at some point, it just depends how long the drugs can keep me well! Fingers crossed a bit longer.
So the last few years the crohns although lingering around has reasonably behaved itself! whoop whoop, the bad news for me being the artritis that came hand in hand with it has stayed and got worse, so i now have constant rheumatoid arthritis,and ankylosing spondylitis, which is a struggle as my spine is fusing , it feels like i have to do everything with a straight back (it looks odd) and i have pain everyday in my feet ankes and knees, i've also just had an X ray to confirm sacro illiitis in my pelvis and hips,i'm having to rely on walking aids and wheelchairs more these days,I feel like an 80 yr old trapped in a 20 somethings body!!!!!
So at present I take azathioprine,pentasa,remicade am currently having IV methylprednisone infusions (i've had 2 in 4 days and having another tommorrow) and i start methatrexate in about a week when my chest x ray comes back.
Sorry for rambling (once I start I can't stop) so thats me,lol. I'd love to hear from ANYONE for a chat or a vent! I hope eveyone is well and I look forward to hearing from you.
Lots of love.
Hannah xxxx:heart:
