- Joined
- Jun 14, 2010
- Messages
- 107
Hiya,
You know you guys from the states are so lucky you can use the net in hospital! Ive missed ya xx Went for the barium that day and it made me so poorly I ended up in the place for another 3 weeks! Gutted! Thats 5 and half weeks out of the last 7 weeks but Im finally on the road to recovery...i hope!
Unfortunatley for me I seem to have had quite a major potassium and calcium absorption problem anyway and so when I was admitted my calcium and potassium levels were very low again and they they just thought this was a straight forward crohns flare thing and thought they could treat me with a couple of infusions to fix it and then treat the crohns flare. So I had 8 days of IV Hydrocortizone and while I was disappointed to be having the steroids again I did feel that ill that I knew I had to do it as a quick fix and tried to focus on all the good things of steroids. So I lay back and waited for them to kick in and dreamed of all the wonderful food I was going to really enjoy eating with no pain. So I waited and waited and by day 5 I still felt no better apart from being really spaced out and hyper and yet exhausted the crohns didnt appear to be getting any better....I still had no apetite and felt horribly sick all the time even drinking a few sips of water.....Shock horror....day 8 arrived and I only felt about a 3 out of 10 better. When Ive been on the IV stuff before Ive felt 100% after 5 days at least so it was very disappointing and confusing.
I wasn't happy with the care I seemed to be getting and luckily my parents managed to get hold of my consultant who has looked after me all these years but didn't even know I was on the ward again. Typical! That morning one of the doctors came round very anxious and flustered and said I must not leave the bed or the ward and I needed IV potassium infusion again as my levels had fallen dangerously low. I now know why at 1 point my heart rate had dropped to 36 irregular and I was having quite a lot of palpitations which I had just thought was the steroids.
Later that day my consultant came up and explained it is quite rare but for whatever reason my potassium levels were not staying up after the infusions and I must have already had a postassium problem and unfortunatley by putting me on the IV steroids it had only made things worse because steroids can make it difficult to absorb potassium anyway! So now they had to get me off them asap and as safely as possible and just let the crohns flare up again as the potassium was more dangerous right now and I had to stay on IV potassium infusions until they could work out what to do and the steroids were out of my system as no matter how much orally I took my levels were not increasing even with the IV. As everyone is different they couldn't tell me how long I would have to be in hospital for and it could be weeks or months. !!!! Bad luck or what!! LOL I wouldnt worry apparently its very very rare and so far I seem to have a reputation for being a not by the book patient or doing anything in half measures! ha ha Eventually the potassium seemed to level out and hopefully is staying up for good again now. Have to spend every friday for the next month at the hospital for tests to make sure and with the azathioprine too but at least I am home! :0) The worst part out of all this was the potassium gave me unpredictable paralysis of my legs which could come on within the space of hours and last for how ever long it wanted and disappear again. One day I got stuck on the floor cos I got down to get my flip flops and I didn't realise it had got so bad until that point and I couldnt get up again!!! LOL it was sooo embarrasing but it was funny too as for about 10 mins I actually sat on the floor hising cos I knew it would look like I had fallen and in the end I had to just shout for help!!!
Anyway to cut a very long story short the crohns flared majorly, my throat, my stomach + ulcer, small intestine minor narrowing, large intestine and as I was struggling to keep anything down I found myself agreeing to NG tube feeding for 6 - 8 weeks and azathioprine. Seems to be going well so far and I am feeling amazing on the tube feeding at least Im getting some good nutrition into me again. They told me I havent been as well as I though I have been the last 4 years cos it was just so much better than before but I had been saying and saying something wasn't right and my gp just kept telling me my bloods were fine. Ive been told this is definatley not reliable....so if your cod says this when you think your having a flare just go get a scope done to be sure cos the bloods are not always accurate.
Been on the aza for nearly 2 weeks now and unfortuanatley got a pretty bad chest infection at the moment on top of everything but hopefully after 48 hrs on the antibiotics will feel much better tomo or tues .....IM really hoping anyway :0) the dr checked my throat yesterday too and said its still pretty ulcerated anyone else have it in their throat?
So....anyone else done it quite in style like this or had these rare problems?? I was completely shocked but at least I know now and everything all fits together now like a bit of a jigsaw!! xx
Love ya all,
Barbie xx:mbh:
You know you guys from the states are so lucky you can use the net in hospital! Ive missed ya xx Went for the barium that day and it made me so poorly I ended up in the place for another 3 weeks! Gutted! Thats 5 and half weeks out of the last 7 weeks but Im finally on the road to recovery...i hope!
Unfortunatley for me I seem to have had quite a major potassium and calcium absorption problem anyway and so when I was admitted my calcium and potassium levels were very low again and they they just thought this was a straight forward crohns flare thing and thought they could treat me with a couple of infusions to fix it and then treat the crohns flare. So I had 8 days of IV Hydrocortizone and while I was disappointed to be having the steroids again I did feel that ill that I knew I had to do it as a quick fix and tried to focus on all the good things of steroids. So I lay back and waited for them to kick in and dreamed of all the wonderful food I was going to really enjoy eating with no pain. So I waited and waited and by day 5 I still felt no better apart from being really spaced out and hyper and yet exhausted the crohns didnt appear to be getting any better....I still had no apetite and felt horribly sick all the time even drinking a few sips of water.....Shock horror....day 8 arrived and I only felt about a 3 out of 10 better. When Ive been on the IV stuff before Ive felt 100% after 5 days at least so it was very disappointing and confusing.
I wasn't happy with the care I seemed to be getting and luckily my parents managed to get hold of my consultant who has looked after me all these years but didn't even know I was on the ward again. Typical! That morning one of the doctors came round very anxious and flustered and said I must not leave the bed or the ward and I needed IV potassium infusion again as my levels had fallen dangerously low. I now know why at 1 point my heart rate had dropped to 36 irregular and I was having quite a lot of palpitations which I had just thought was the steroids.
Later that day my consultant came up and explained it is quite rare but for whatever reason my potassium levels were not staying up after the infusions and I must have already had a postassium problem and unfortunatley by putting me on the IV steroids it had only made things worse because steroids can make it difficult to absorb potassium anyway! So now they had to get me off them asap and as safely as possible and just let the crohns flare up again as the potassium was more dangerous right now and I had to stay on IV potassium infusions until they could work out what to do and the steroids were out of my system as no matter how much orally I took my levels were not increasing even with the IV. As everyone is different they couldn't tell me how long I would have to be in hospital for and it could be weeks or months. !!!! Bad luck or what!! LOL I wouldnt worry apparently its very very rare and so far I seem to have a reputation for being a not by the book patient or doing anything in half measures! ha ha Eventually the potassium seemed to level out and hopefully is staying up for good again now. Have to spend every friday for the next month at the hospital for tests to make sure and with the azathioprine too but at least I am home! :0) The worst part out of all this was the potassium gave me unpredictable paralysis of my legs which could come on within the space of hours and last for how ever long it wanted and disappear again. One day I got stuck on the floor cos I got down to get my flip flops and I didn't realise it had got so bad until that point and I couldnt get up again!!! LOL it was sooo embarrasing but it was funny too as for about 10 mins I actually sat on the floor hising cos I knew it would look like I had fallen and in the end I had to just shout for help!!!
Anyway to cut a very long story short the crohns flared majorly, my throat, my stomach + ulcer, small intestine minor narrowing, large intestine and as I was struggling to keep anything down I found myself agreeing to NG tube feeding for 6 - 8 weeks and azathioprine. Seems to be going well so far and I am feeling amazing on the tube feeding at least Im getting some good nutrition into me again. They told me I havent been as well as I though I have been the last 4 years cos it was just so much better than before but I had been saying and saying something wasn't right and my gp just kept telling me my bloods were fine. Ive been told this is definatley not reliable....so if your cod says this when you think your having a flare just go get a scope done to be sure cos the bloods are not always accurate.
Been on the aza for nearly 2 weeks now and unfortuanatley got a pretty bad chest infection at the moment on top of everything but hopefully after 48 hrs on the antibiotics will feel much better tomo or tues .....IM really hoping anyway :0) the dr checked my throat yesterday too and said its still pretty ulcerated anyone else have it in their throat?
So....anyone else done it quite in style like this or had these rare problems?? I was completely shocked but at least I know now and everything all fits together now like a bit of a jigsaw!! xx
Love ya all,
Barbie xx:mbh:
