I was DX with Crohn's when i was 15, I am 40 now.
In the beginning things were pretty rough, I have CD colitius and perioanal disease with multiple fistula. The fistula were the worst; very painfull, very nasty and very dammaging to your self image and self worth (especually at that age).
I went thru every medication there was, even spent 6 months without eating any food...that was fun...nothing really helped.
Then Remicade came around and i got into the test groups for it, it did take a year of the stuff before we started really seeing improvements. I started Remicade in 1999 and have been on it ever since. The last 7 years or so, things have been pretty good. Fistula's closed up, no pain; just loose bowel and bouts of diarrheah.
About 3 or 4 months ago though, i have been feeling...pressure...in my but; kinda felt like there was a balloon in there...started noticing disscharge from anus (infection). Things at my work are stressfull and busy so i did not attend to it like i should have. Bowel movements became harder and stool diameter decreased. Was off at a work training school for a week, things got way worse...managed to finish the school (got an %100); managed to somehow drive the 8 hour trip back then collapsed and went to the ER.
Bad stricture at the ileocecal valve (a spot i have always shown irritation).
We did an Illeocolostomy (sp?) which went well other then the surgical staples making me bleed out into the intestines...anyway...home recovering. Learning how to poop all over again and trying to deal with the bad pain of re-opened fistula's again. These are producing a lot of fecal matter which really is painfull :C
Getting a promethius test ran soon to see if i have bult up anti-bodias to Remicade.
...I go back to work monday, not sure how i am going to fair...all these years of fighting and i feel like giving up and asking for dissibility so i can stay home near my bathroom and focus on ME and healing without the stress of work....
But since i have had tons of experiance with dealing with this disease, I thought i would seek out others. Mayhaps i have somethng usefull for you; or the other way around
In the beginning things were pretty rough, I have CD colitius and perioanal disease with multiple fistula. The fistula were the worst; very painfull, very nasty and very dammaging to your self image and self worth (especually at that age).
I went thru every medication there was, even spent 6 months without eating any food...that was fun...nothing really helped.
Then Remicade came around and i got into the test groups for it, it did take a year of the stuff before we started really seeing improvements. I started Remicade in 1999 and have been on it ever since. The last 7 years or so, things have been pretty good. Fistula's closed up, no pain; just loose bowel and bouts of diarrheah.
About 3 or 4 months ago though, i have been feeling...pressure...in my but; kinda felt like there was a balloon in there...started noticing disscharge from anus (infection). Things at my work are stressfull and busy so i did not attend to it like i should have. Bowel movements became harder and stool diameter decreased. Was off at a work training school for a week, things got way worse...managed to finish the school (got an %100); managed to somehow drive the 8 hour trip back then collapsed and went to the ER.
Bad stricture at the ileocecal valve (a spot i have always shown irritation).
We did an Illeocolostomy (sp?) which went well other then the surgical staples making me bleed out into the intestines...anyway...home recovering. Learning how to poop all over again and trying to deal with the bad pain of re-opened fistula's again. These are producing a lot of fecal matter which really is painfull :C
Getting a promethius test ran soon to see if i have bult up anti-bodias to Remicade.
...I go back to work monday, not sure how i am going to fair...all these years of fighting and i feel like giving up and asking for dissibility so i can stay home near my bathroom and focus on ME and healing without the stress of work....
But since i have had tons of experiance with dealing with this disease, I thought i would seek out others. Mayhaps i have somethng usefull for you; or the other way around