- Joined
- Mar 23, 2009
- Messages
- 83
Hi all
I stumbled onto this forum about two months ago and I've finally decided to introduce myself and tell my story. First of all let me say that I've really been impressed by the amount of support and understanding that I've seen exhibited by all the members. It's good to know that there are others out there who share my experience and know a little about what I'm going through.
Here's my story:
The first signs of trouble came in 2001, I was 18 years old and just starting university. I lost my appetite completely and lost over 15kg in about 2 months. I also suffered from mouth ulcers and stomach pains. I resisted my parent's pleas to see a doctor for well over 3 months. I have a laid back personality where I'd rather let things sort themselves out rather than try to figure what the issue is and solve it myself. So I sat on the problem and hoped that it would go away - it didn't. Eventually I saw the GP who immediately ordered blood tests, colonoscopy, gastroscopy, barium meal, utrasound and probably a whole bunch of other things that I've forgotten about. Anyway the end result was that he didn't know exactly what it was but he thought it was probably IBD.
I was refered to a GI specialist who decided to run ran his own tests and finally diagnosed me with crohn's. Of course this all didn't happen overnight. I think it took the best part of 01 before I had a definitive diagnosis of what I had. During this time I suffered from the above mentioned symptoms together with severe lethargy and exhaustion and just a general lack of interest in anything. I did extremely badly in uni, I went from being a top performer in high school to failing virtually every subject I did in my first year. I remember several occasions where I spent no more than 15 minutes at uni before deciding to go back home because I was in pain or I just couldn't muster the energy or the interest.
I was put on mesalazine and pred as well as iron tablets to combat the anemia that I had developed. I had a bad reaction to mesalazine and was put on imuran instead. This calmed the symptoms down and I was able to put some kilos back on. But by this time the crohn's had wreaked havoc on my life. I had two years of very bad uni grades leading to a year's suspension, I lost contact with most of my friends and I my mental state was the worst that it has been my whole life.
In 03 I was able to ween myself off the pred without a recurrence of the symptoms until I was only on the imuran (100 mg). My GI told that I was in remission and I thought that the worst of it was over. I got back into university and started to get good grades and I switched my degree to something that I enjoyed. Things were looking up.
Unfortunately this did not last long. By late 04 the symptoms had returned, only worse. I didn't get mouth ulcers anymore but these were replaced by violent and sudden diarrhea and acute stomach pains whenever I put anything in my mouth. I also got pains down my left leg every time I took a dump. My specialist told me that I would probably need an operation and carried out a bunch of test including CT scan and barium meal test. Unfortunately these did not reveal just how mangled my insides had become.
I saw a surgeon in early 05 and we set a date for an operation. But before this date arrived I suffered from a bowel obstruction that had me rushing to the emergency room. That night I suffered from the worst pain I felt before or since - despite everything else that I've since been through. The surgeon decided to do the operation then and there. He told me that it would mostly likely be a small rececssion that he'd be able to do with a keyhole incision. But like I said earlier, no one had realised how damaged my intestines were. They ended up having to make a large incision and recect about 50cm from the terminal ilium and sigmoid. There was so much adhesion that it took them 4 hours to pull my intestines apart and there was even a danger that my bladder could have been permanently damaged. You know your an unusual case when the surgical registrar gets excited describing the surgery to you - it reminded me of a Seinfeld joke.
In order to allow my bowel to heal properly I had a temporary illeostomy put in. It was removed after 12 weeks, but not before several embarrassing incidents and much heartache.
After the operation I was transferred to GI doc who specialises in Crohn's. For the next two years I settled into a routine of upping my pred, and then trying to ween off it in combination with something new that we hoped would work - it never did. This included ever increasing doses of Imuran (up to 250mg); HUMIRA which worked for about three months; and most recently Remicade which seemed to work until I had a flair up about three weeks ago. I have now switched the Imuran to methotrexate injections and I'm again going through the weening cycle.
In the meantime I graduated from uni in 07 and was lucky enough to land a good first job with a large pharmaceutical concern. Unfortunately in May last year a CT scan revealed several strictures that needed to be operated on. This time they did a strictureplasty rather than a rececssion (I'd already lost enough bowel). I recovered from the surgery in time to find out that I'd lost my job due to a corporate restructure and the world financial markets were in melt down. So I've been looking for a job since - yet another time when Crohns has stuffed up my plans and ambitions.
Anyway, I probably shouldn't complain, after reading these forums I realised that many people have gone through a lot worse. Sorry about the essay, I don't expect people to read it all but it's good to vent. In fact looking at it now it probably doesn't say half the story, but I'm sure you all know what the life of a Crohnie is like.
p.s. Did I mention I have osteoperosis at 25? Turns out taking high doses of pred for such a long time destroys your bones. I'm taking pamidronate infusions as well as calcium and vitamin D for it.
That's enough for now. Thanks for reading.
I stumbled onto this forum about two months ago and I've finally decided to introduce myself and tell my story. First of all let me say that I've really been impressed by the amount of support and understanding that I've seen exhibited by all the members. It's good to know that there are others out there who share my experience and know a little about what I'm going through.
Here's my story:
The first signs of trouble came in 2001, I was 18 years old and just starting university. I lost my appetite completely and lost over 15kg in about 2 months. I also suffered from mouth ulcers and stomach pains. I resisted my parent's pleas to see a doctor for well over 3 months. I have a laid back personality where I'd rather let things sort themselves out rather than try to figure what the issue is and solve it myself. So I sat on the problem and hoped that it would go away - it didn't. Eventually I saw the GP who immediately ordered blood tests, colonoscopy, gastroscopy, barium meal, utrasound and probably a whole bunch of other things that I've forgotten about. Anyway the end result was that he didn't know exactly what it was but he thought it was probably IBD.
I was refered to a GI specialist who decided to run ran his own tests and finally diagnosed me with crohn's. Of course this all didn't happen overnight. I think it took the best part of 01 before I had a definitive diagnosis of what I had. During this time I suffered from the above mentioned symptoms together with severe lethargy and exhaustion and just a general lack of interest in anything. I did extremely badly in uni, I went from being a top performer in high school to failing virtually every subject I did in my first year. I remember several occasions where I spent no more than 15 minutes at uni before deciding to go back home because I was in pain or I just couldn't muster the energy or the interest.
I was put on mesalazine and pred as well as iron tablets to combat the anemia that I had developed. I had a bad reaction to mesalazine and was put on imuran instead. This calmed the symptoms down and I was able to put some kilos back on. But by this time the crohn's had wreaked havoc on my life. I had two years of very bad uni grades leading to a year's suspension, I lost contact with most of my friends and I my mental state was the worst that it has been my whole life.
In 03 I was able to ween myself off the pred without a recurrence of the symptoms until I was only on the imuran (100 mg). My GI told that I was in remission and I thought that the worst of it was over. I got back into university and started to get good grades and I switched my degree to something that I enjoyed. Things were looking up.
Unfortunately this did not last long. By late 04 the symptoms had returned, only worse. I didn't get mouth ulcers anymore but these were replaced by violent and sudden diarrhea and acute stomach pains whenever I put anything in my mouth. I also got pains down my left leg every time I took a dump. My specialist told me that I would probably need an operation and carried out a bunch of test including CT scan and barium meal test. Unfortunately these did not reveal just how mangled my insides had become.
I saw a surgeon in early 05 and we set a date for an operation. But before this date arrived I suffered from a bowel obstruction that had me rushing to the emergency room. That night I suffered from the worst pain I felt before or since - despite everything else that I've since been through. The surgeon decided to do the operation then and there. He told me that it would mostly likely be a small rececssion that he'd be able to do with a keyhole incision. But like I said earlier, no one had realised how damaged my intestines were. They ended up having to make a large incision and recect about 50cm from the terminal ilium and sigmoid. There was so much adhesion that it took them 4 hours to pull my intestines apart and there was even a danger that my bladder could have been permanently damaged. You know your an unusual case when the surgical registrar gets excited describing the surgery to you - it reminded me of a Seinfeld joke.
In order to allow my bowel to heal properly I had a temporary illeostomy put in. It was removed after 12 weeks, but not before several embarrassing incidents and much heartache.
After the operation I was transferred to GI doc who specialises in Crohn's. For the next two years I settled into a routine of upping my pred, and then trying to ween off it in combination with something new that we hoped would work - it never did. This included ever increasing doses of Imuran (up to 250mg); HUMIRA which worked for about three months; and most recently Remicade which seemed to work until I had a flair up about three weeks ago. I have now switched the Imuran to methotrexate injections and I'm again going through the weening cycle.
In the meantime I graduated from uni in 07 and was lucky enough to land a good first job with a large pharmaceutical concern. Unfortunately in May last year a CT scan revealed several strictures that needed to be operated on. This time they did a strictureplasty rather than a rececssion (I'd already lost enough bowel). I recovered from the surgery in time to find out that I'd lost my job due to a corporate restructure and the world financial markets were in melt down. So I've been looking for a job since - yet another time when Crohns has stuffed up my plans and ambitions.
Anyway, I probably shouldn't complain, after reading these forums I realised that many people have gone through a lot worse. Sorry about the essay, I don't expect people to read it all but it's good to vent. In fact looking at it now it probably doesn't say half the story, but I'm sure you all know what the life of a Crohnie is like.
p.s. Did I mention I have osteoperosis at 25? Turns out taking high doses of pred for such a long time destroys your bones. I'm taking pamidronate infusions as well as calcium and vitamin D for it.
That's enough for now. Thanks for reading.
i'm so sorry you've had your life touched in so many ways by Crohn's. jeez it doesn't half make its presence known, huh?
