- Joined
- Nov 9, 2012
- Messages
- 6
Hi from Oz!!
Surfing the Web about Crohn's and stumbled across this very informative forum..... WOW..... i've been going about this on my own for the past 2 1/2 years.
Ok so a little history about me.... I'm 42 and believe it or not i was only diagnosed 2 1/2 years ago (just b4 my 40th - yay!! not!) with Crohns. I presented to A&E with chronic abdo and back pain - with suspected Gall Bladder issues. After a CT scan - the Dr asked me - 'How long have you had Crohn's Disease?' my response (in disbelief) was 'Huh? whats that? this is the first i have heard of it?' At that point they believed i would have had it for at least 20 years - undiagnosed. Now all my life i have had abdo pain, suffered constipation (not usual symptoms for crohns i know...)...but....this was jsut a part of life - sure pain was there, but i just persisted - took a laxative and it all went away..... un beknown to me - the laxative just helped to push things through the inflammed bowel....well for the first 8mths after diagnosis i was admitted into hospital 6 times on IV anti B's and prednisolone - only to be released each time with more steroids and azothiaprine. on the 9th month after diagnosis i again was admitted into hospital with chronic lower abdo pain - only to find on the second day i begain to urinate what smelled and looked like fecal fluid (sorry thats gross i know) i was quickly transferred to a larger hospital (i live in country NSW, Australia - a bit isolated) and it was discovered i had a fistula which had adhered to my bladder...... this was drained and I was placed on TPN to rest the bowel for 3 weeks - to no avail - and underwent a bowel resection whicch consequently ended up with a temp ileostomy..... This was (pardon the pun) the biggest thorn in my side - i had what was called an innard - so my stoma did not protrude - and i had difficulty forming seal - resulting in very excoriated skin around it... i put up with this for 5 months with infection aftr infection..... the day finally arrived for the reversal of my ileostomy..... the best and worst day of my life!!!!!
As they went in - for what i was told was to be a simple operation - this was not to be - they discovered that the bit of intestine they were to rejoin had adhered to the top and wouldnt budge - so i was re cut on my original incision (which went from just under my sternum to just above my pelvis) and they performed another resection - thankfully another ileostomy was not required... all seemed well ....for approx 7 days where i was tolerating fluids and mush - however anything more solid than stewed apples would come back up..... so to rest the bowel i was once again put on TPN - for two weeks - however pain became incredibly unbearable and after CT's and a Barium xray - they concluded i had another Small Bowel Obstruction and i was off to surgery again - So in 6 months i had been cut 3 times on the same incision...............
WELL one would think i had been through enough by this stage.... well this was not to be..... with my body not having fully recovered from the previous ops - my rate of fighting infection came to an all time low and i got quite a sever wound infection from it splitting -( ouch..... i know). i also developed a yeast infection in my TPN line which also went through my blood causing me to become incredibly ill - they then had to change my line to a central line in my neck....
my iron levels flat lined so - i was give an iron infusion - resulting in me having an anaphylactic reaction to ( you just wouldnt believ it would u - but hold on it doesnt finish there) my infection wasnt going away and i was having high grade temperatures which they couldnt drop - so i was referred to infection control lab..... finally put on the right anti B's and thought all was good - so the time comes where htey tell me i can head home by the end of the week - well guess who ended up with a blod clot in the right lung causing an upper right lung infarction - so another fortnight in hospital on blood thinners............ after 3 months - i finall went home BUT am here to tell the story..... am told those days in ICU were pretty touch and go...............
it is now 12 months since i was discharged and i have never felt better - the moans and groans from my bellly still emerge and frequent/ urgent escapes to the bathroom are imminent - but that is due to now having Short Bowel Syndrome along with Crohns.....
OMG- i have just looked at how much i have written - this is the first time i have let it all out - sorry for the never ending saga - but thats my story...... no flares, no pain now- just gurgles and quick escapes!!!!
i have photos of my first surgery (if anyone would like to see - only if you can stomach it) - it is amazing to see how damaged the part they removed was - i was told it was the best crohns they had seen - but obviously was worse for me..............
i promise i wont write as much again
cheers
Grace
Surfing the Web about Crohn's and stumbled across this very informative forum..... WOW..... i've been going about this on my own for the past 2 1/2 years.
Ok so a little history about me.... I'm 42 and believe it or not i was only diagnosed 2 1/2 years ago (just b4 my 40th - yay!! not!) with Crohns. I presented to A&E with chronic abdo and back pain - with suspected Gall Bladder issues. After a CT scan - the Dr asked me - 'How long have you had Crohn's Disease?' my response (in disbelief) was 'Huh? whats that? this is the first i have heard of it?' At that point they believed i would have had it for at least 20 years - undiagnosed. Now all my life i have had abdo pain, suffered constipation (not usual symptoms for crohns i know...)...but....this was jsut a part of life - sure pain was there, but i just persisted - took a laxative and it all went away..... un beknown to me - the laxative just helped to push things through the inflammed bowel....well for the first 8mths after diagnosis i was admitted into hospital 6 times on IV anti B's and prednisolone - only to be released each time with more steroids and azothiaprine. on the 9th month after diagnosis i again was admitted into hospital with chronic lower abdo pain - only to find on the second day i begain to urinate what smelled and looked like fecal fluid (sorry thats gross i know) i was quickly transferred to a larger hospital (i live in country NSW, Australia - a bit isolated) and it was discovered i had a fistula which had adhered to my bladder...... this was drained and I was placed on TPN to rest the bowel for 3 weeks - to no avail - and underwent a bowel resection whicch consequently ended up with a temp ileostomy..... This was (pardon the pun) the biggest thorn in my side - i had what was called an innard - so my stoma did not protrude - and i had difficulty forming seal - resulting in very excoriated skin around it... i put up with this for 5 months with infection aftr infection..... the day finally arrived for the reversal of my ileostomy..... the best and worst day of my life!!!!!
As they went in - for what i was told was to be a simple operation - this was not to be - they discovered that the bit of intestine they were to rejoin had adhered to the top and wouldnt budge - so i was re cut on my original incision (which went from just under my sternum to just above my pelvis) and they performed another resection - thankfully another ileostomy was not required... all seemed well ....for approx 7 days where i was tolerating fluids and mush - however anything more solid than stewed apples would come back up..... so to rest the bowel i was once again put on TPN - for two weeks - however pain became incredibly unbearable and after CT's and a Barium xray - they concluded i had another Small Bowel Obstruction and i was off to surgery again - So in 6 months i had been cut 3 times on the same incision...............
WELL one would think i had been through enough by this stage.... well this was not to be..... with my body not having fully recovered from the previous ops - my rate of fighting infection came to an all time low and i got quite a sever wound infection from it splitting -( ouch..... i know). i also developed a yeast infection in my TPN line which also went through my blood causing me to become incredibly ill - they then had to change my line to a central line in my neck....
my iron levels flat lined so - i was give an iron infusion - resulting in me having an anaphylactic reaction to ( you just wouldnt believ it would u - but hold on it doesnt finish there) my infection wasnt going away and i was having high grade temperatures which they couldnt drop - so i was referred to infection control lab..... finally put on the right anti B's and thought all was good - so the time comes where htey tell me i can head home by the end of the week - well guess who ended up with a blod clot in the right lung causing an upper right lung infarction - so another fortnight in hospital on blood thinners............ after 3 months - i finall went home BUT am here to tell the story..... am told those days in ICU were pretty touch and go...............
it is now 12 months since i was discharged and i have never felt better - the moans and groans from my bellly still emerge and frequent/ urgent escapes to the bathroom are imminent - but that is due to now having Short Bowel Syndrome along with Crohns.....
OMG- i have just looked at how much i have written - this is the first time i have let it all out - sorry for the never ending saga - but thats my story...... no flares, no pain now- just gurgles and quick escapes!!!!
i have photos of my first surgery (if anyone would like to see - only if you can stomach it) - it is amazing to see how damaged the part they removed was - i was told it was the best crohns they had seen - but obviously was worse for me..............
i promise i wont write as much again
cheers
Grace
