S
SIMMI1980
Guest
Hi just thought i would add my story
I was first diagnosed with crohn's age 5.The docs put on sulfazalazine straight away and within 3years there was no sign of any crohn's.
I suffered no problems with crohn's until 2000 aged 20 when crohn's came back really bad.I started suffering from severe diarrhea passing loads of puss and blood.
After my first visit to the endoscopy department i was told that crohns was indeed back and is was quite severe.The docs told me that its the rectum, anus and last part of the bowel that are diseased.I was put on Pred,asacol and a few other pills aswell.I went on for about 1 year of what seemed like course after course of pred.Then they put me on azathioprine.Nothing really changed over the next 4 years ,diarrhea ,stomach cramps, passing blood , weight loss etc.Just before crohn's flared up i was about 12 / 13 stone I'm now just under 9 stone.The hospital then started trying other meds names of which i can't remember .
Then about late 2003 i started having problems with a periannal abscess which has now developed into a complex fistula.Also i started having bother passing stools and constipations.I then spent the next 3 years in and out of hospital to get abscess drained and have drains put in ( which fell out after a couple weeks )
I had a barium x-ray in late 2006 which showed no strictures or narrowing.
Then a ct scan and mri scan.these showed thickening in the last part of my bowel.
Then in feb this year was rushed into hospital to get this fistula drained again.Once i was back in the ward a nurse told me that the surgeon wanted to see me before i could go home.When he arrived he told me that there is big cavity running up the side of my bowel and that anus/rectum are in an absolute mess and the only why he could see me that i would get a decent quality of life would be for him to do a pan proctocolectomy and a permanent ileostomy.I was quite gutted if I'm honest but i kind of knew that it would result in this.Was still a bit of a shock though .The surgeon told me to go away discuss it with my wife and family but that was his opinion.
I was admitted to hospital about 6 weeks ago where i spoke with my gastro doc and he agreed with me that the stoma bag was the way forward as nothing was really responding to medical treatment and the surgeon whom told me that i need a bag is in fact one of if not the top bowel surgeon in the country and that if that's what his opinion is really thats what i need to go for.So i just waiting for my appointment to have the operation now.So here's to hopefully getting a life again as i have a job ,wife and two small kids ( 6yrs and 8 weeks ) old.All i now want is to be able to go to work and not be of sick 2 or 3 times a week and do things with my family.I know that it wont be easy to start with but anythings got to be better than living like this.
Any comments welcome especially anyone who has had a proctocolecomy and stoma bag.. Thanks for reading.
I was first diagnosed with crohn's age 5.The docs put on sulfazalazine straight away and within 3years there was no sign of any crohn's.
I suffered no problems with crohn's until 2000 aged 20 when crohn's came back really bad.I started suffering from severe diarrhea passing loads of puss and blood.
After my first visit to the endoscopy department i was told that crohns was indeed back and is was quite severe.The docs told me that its the rectum, anus and last part of the bowel that are diseased.I was put on Pred,asacol and a few other pills aswell.I went on for about 1 year of what seemed like course after course of pred.Then they put me on azathioprine.Nothing really changed over the next 4 years ,diarrhea ,stomach cramps, passing blood , weight loss etc.Just before crohn's flared up i was about 12 / 13 stone I'm now just under 9 stone.The hospital then started trying other meds names of which i can't remember .
Then about late 2003 i started having problems with a periannal abscess which has now developed into a complex fistula.Also i started having bother passing stools and constipations.I then spent the next 3 years in and out of hospital to get abscess drained and have drains put in ( which fell out after a couple weeks )
I had a barium x-ray in late 2006 which showed no strictures or narrowing.
Then a ct scan and mri scan.these showed thickening in the last part of my bowel.
Then in feb this year was rushed into hospital to get this fistula drained again.Once i was back in the ward a nurse told me that the surgeon wanted to see me before i could go home.When he arrived he told me that there is big cavity running up the side of my bowel and that anus/rectum are in an absolute mess and the only why he could see me that i would get a decent quality of life would be for him to do a pan proctocolectomy and a permanent ileostomy.I was quite gutted if I'm honest but i kind of knew that it would result in this.Was still a bit of a shock though .The surgeon told me to go away discuss it with my wife and family but that was his opinion.
I was admitted to hospital about 6 weeks ago where i spoke with my gastro doc and he agreed with me that the stoma bag was the way forward as nothing was really responding to medical treatment and the surgeon whom told me that i need a bag is in fact one of if not the top bowel surgeon in the country and that if that's what his opinion is really thats what i need to go for.So i just waiting for my appointment to have the operation now.So here's to hopefully getting a life again as i have a job ,wife and two small kids ( 6yrs and 8 weeks ) old.All i now want is to be able to go to work and not be of sick 2 or 3 times a week and do things with my family.I know that it wont be easy to start with but anythings got to be better than living like this.
Any comments welcome especially anyone who has had a proctocolecomy and stoma bag.. Thanks for reading.
