Crohns2
Hi everybody!
Okay, first of all - this is a really amazing forum! So many stories and experiences, so many similarities and new info related to my own life. Makes me feel so much better about my own life and struggle with Crohn's.
Was first diagnosed with Crohns 9 years ago, only eleven and kinda shocked. The first "cure" was 7 weeks on Elemental diet (gastric feeding tube)+Imurel (aza), then continued with pred+aza. = Remession
After that ive been on and off pretty much every drug there is. My body was almost always good, except some relapses. My stats has been going up and down, but has always been to high.
Luckily my "flares" only lasted days, and often had months between them. My only real symptoms, for 8 years was occational stumack pains, very few times with D and sometimes blood, so ive been relatively lucky compared to some...
Have always been super active, both sports (baseball, downhill skiing, xcountry skiing, running, football++, and my main sport the last 6 years road cycling) and socially. So pretty fit, good grades, had a job since 12yrs and very social, so that is me. Or should i say was me.
It all started last spring. Yet another spike in my stats, and on new meds *Humira, go-go*. Seamed to be working quite well, and my values was almost "normal". Then during the summer i got really bad. As said earlier, had very few symptoms, so the tiredness, Dx10, super moody (sometimes without knowing it), ridiculous pains and so on, really took me by surprice.
During fall i kept getting worse, upped the meds and it kinda sorta helped, but not really. I kept getting better and worse, and was pretty much in bed/on the couch all the time. Went from super active, to tired, malnourished, loosing weight (40lbs, mostly muscles ), loosing both blood and liquids during D. I didnt cope at all, espec my social life just flipped a swich. I shut down, almost no contact with friends, no Facebook at all (!), even stopped answering the phone for a while. Whenever i felt a bit better, i just crashed and burned. I really almost lost it.
So a sucky last year, but now its looking up.
This last month ive had gastroscopy, coloskopi, a lot of blood work, fecal tests, MRI and latest; using a new technique with ultra sound.
First the doctor feared a bad stricture (with inflamm+scar tissue) in terminal illeum, cecum and ileocecal valve. "Small resection here i come"
After Gastro+coloskopi they confirmed the inflam+stricture and added three new spots with inflammation in the stransvers colon, and some in my stomach and duodenum.
*Holy shit - "Full Colostomy here a come" *
Then came thw the latest; ultrasound. Only showed inflammation and no scar tissue. Although the inflammed walls in terminal illeum was 10 times thicker then they should be, it means it might be a shot of no surgery. So Super Happy!
Now, Azza, Humira, half liquid and a prednisolone diet the next months (really looking forward getting moonfaced :S) - just really really hopes this works.
Wish you all the best - Nicolai
PS! Sorry for the rediculously long text:sorry:
Hi everybody!
Okay, first of all - this is a really amazing forum! So many stories and experiences, so many similarities and new info related to my own life. Makes me feel so much better about my own life and struggle with Crohn's.
Was first diagnosed with Crohns 9 years ago, only eleven and kinda shocked. The first "cure" was 7 weeks on Elemental diet (gastric feeding tube)+Imurel (aza), then continued with pred+aza. = Remession
After that ive been on and off pretty much every drug there is. My body was almost always good, except some relapses. My stats has been going up and down, but has always been to high.
Luckily my "flares" only lasted days, and often had months between them. My only real symptoms, for 8 years was occational stumack pains, very few times with D and sometimes blood, so ive been relatively lucky compared to some...
Have always been super active, both sports (baseball, downhill skiing, xcountry skiing, running, football++, and my main sport the last 6 years road cycling) and socially. So pretty fit, good grades, had a job since 12yrs and very social, so that is me. Or should i say was me.
It all started last spring. Yet another spike in my stats, and on new meds *Humira, go-go*. Seamed to be working quite well, and my values was almost "normal". Then during the summer i got really bad. As said earlier, had very few symptoms, so the tiredness, Dx10, super moody (sometimes without knowing it), ridiculous pains and so on, really took me by surprice.
During fall i kept getting worse, upped the meds and it kinda sorta helped, but not really. I kept getting better and worse, and was pretty much in bed/on the couch all the time. Went from super active, to tired, malnourished, loosing weight (40lbs, mostly muscles
), loosing both blood and liquids during D. I didnt cope at all, espec my social life just flipped a swich. I shut down, almost no contact with friends, no Facebook at all (!), even stopped answering the phone for a while. Whenever i felt a bit better, i just crashed and burned. I really almost lost it.So a sucky last year, but now its looking up.
This last month ive had gastroscopy, coloskopi, a lot of blood work, fecal tests, MRI and latest; using a new technique with ultra sound.
First the doctor feared a bad stricture (with inflamm+scar tissue) in terminal illeum, cecum and ileocecal valve. "Small resection here i come"
After Gastro+coloskopi they confirmed the inflam+stricture and added three new spots with inflammation in the stransvers colon, and some in my stomach and duodenum.
*Holy shit - "Full Colostomy here a come"
*Then came thw the latest; ultrasound. Only showed inflammation and no scar tissue. Although the inflammed walls in terminal illeum was 10 times thicker then they should be, it means it might be a shot of no surgery. So Super Happy!
Now, Azza, Humira, half liquid and a prednisolone diet the next months (really looking forward getting moonfaced :S) - just really really hopes this works.
Wish you all the best - Nicolai
PS! Sorry for the rediculously long text:sorry:
Last edited:
