- Joined
- Apr 22, 2012
- Messages
- 3
Im new here, and thought this would be a good place to start...
Im at the moment diagnosed with the following : crohns disease, ileoanalanastomosis, sacroilitis.... A few years ago they thought I had colitis, instead of crohns....
My story starts in '91....
Bleeding from the rectum, I thought it was something simple like hemorrhoids.. A few weeks went by, and I went to the doctor who quickly referred me to the hospital, for a coloscopy.. Very fast it was determined that I had some form of IBD, likely colitis...
Within a few months the diagnosis was clear.. Colitis....
After a year from first symptom, I was treated with different medicine locally, but with no real effect, then they tried prednisone, and I worked, at least for a little while, then the bleeding came back... and they just kept treating it locally and with different ineffective things..
All most to the month, 3 years after first symptom I moved across country, and my symptoms escalated from 20 cm to 60 cm effected intestine in less than a month. At this time my new doctors tried treating me with imurel, which just gave me other problems, I don't know the English names for it, but it was big red besting like patches on my legs, and muscle spasms in my spine.. So they stopped that instantly, and then offers me prednisone again or operation.. I had a bad trip on prednisone last time so I opted for the colectomy, and after a few months I got the ileoanalanastomosis. And I loved it!
It was hard, really hard, for about a year, but after that I was completely symptom free for almost 6 years.
Then I started working at the hairdressing salon I work at now, in August I'Ve been here for 5 years.. At this point I'm still symptom free... But here I get more responsibility, and I love it... It's a great job... But after a few months I had a routine tjekup, and they discoverd that I had sores in my small intestine... At first they thought it was pouchitis, but after a few unsuccessful treatments they started talking about crohns, and I got scared... All this time I consoled myself in thinking that it was only colitis, and that I was cured with my operation
And since then its been going down hill
After a round of remicade, they finally settled on the fact that I had crohns... My lumbar region started playing up... They found out that I was making antibodies for the remicade, so they stopped it, but then my back went nuts... And they started remicade up again, as part of a medical trial. Only to switch me to humira, because of the antibodies....
So that's where I'm at now with the crohns...
I've since got the diagnosis sacroilitis, and at the moment I'm wating for an MRI scan, and only being treated with humira and oxycodone... And feeling stressed...
I'm having panic attacks, crying uncontrollably, hating going out ( even to work) having ticks (eye and finger) sweating under pressure and stuff like that...
But trying to cope with it, best I can...
So.... That was my story... Thought I would start out with all the dirty details, so I didn't have to explain it later....
Thanks to all who read the whole mess
Moonmistress aka Sabina....
Im at the moment diagnosed with the following : crohns disease, ileoanalanastomosis, sacroilitis.... A few years ago they thought I had colitis, instead of crohns....
My story starts in '91....
Bleeding from the rectum, I thought it was something simple like hemorrhoids.. A few weeks went by, and I went to the doctor who quickly referred me to the hospital, for a coloscopy.. Very fast it was determined that I had some form of IBD, likely colitis...
Within a few months the diagnosis was clear.. Colitis....
After a year from first symptom, I was treated with different medicine locally, but with no real effect, then they tried prednisone, and I worked, at least for a little while, then the bleeding came back... and they just kept treating it locally and with different ineffective things..
All most to the month, 3 years after first symptom I moved across country, and my symptoms escalated from 20 cm to 60 cm effected intestine in less than a month. At this time my new doctors tried treating me with imurel, which just gave me other problems, I don't know the English names for it, but it was big red besting like patches on my legs, and muscle spasms in my spine.. So they stopped that instantly, and then offers me prednisone again or operation.. I had a bad trip on prednisone last time so I opted for the colectomy, and after a few months I got the ileoanalanastomosis. And I loved it!
It was hard, really hard, for about a year, but after that I was completely symptom free for almost 6 years.
Then I started working at the hairdressing salon I work at now, in August I'Ve been here for 5 years.. At this point I'm still symptom free... But here I get more responsibility, and I love it... It's a great job... But after a few months I had a routine tjekup, and they discoverd that I had sores in my small intestine... At first they thought it was pouchitis, but after a few unsuccessful treatments they started talking about crohns, and I got scared... All this time I consoled myself in thinking that it was only colitis, and that I was cured with my operation
And since then its been going down hill
After a round of remicade, they finally settled on the fact that I had crohns... My lumbar region started playing up... They found out that I was making antibodies for the remicade, so they stopped it, but then my back went nuts... And they started remicade up again, as part of a medical trial. Only to switch me to humira, because of the antibodies....
So that's where I'm at now with the crohns...
I've since got the diagnosis sacroilitis, and at the moment I'm wating for an MRI scan, and only being treated with humira and oxycodone... And feeling stressed...
I'm having panic attacks, crying uncontrollably, hating going out ( even to work) having ticks (eye and finger) sweating under pressure and stuff like that...
But trying to cope with it, best I can...
So.... That was my story... Thought I would start out with all the dirty details, so I didn't have to explain it later....
Thanks to all who read the whole mess
Moonmistress aka Sabina....