Back in '96, when i was a younger man. of 16yrs old, symptoms began. Went to my GP who of course was clueless and therefore i must of had stress. i didn't know any better so i figured, yeah sure, makes sense? symptoms hadn't been too bad so i just dealt with it and never thought anything of it.
I went off to college to acquire a degree in equine science, where the focus was horse training. my sophomore year fall semester i really didn't feel well. by spring semester i developed a very painful spot, now known as fred, the fistula. Fred was a real issue while riding horses and the pain was rather impressive. the abscess really scared me at the time not knowing what or why it was there. Being the stubborn.... that i am i figured i'd get through the semester and when i got back home where i had a greater faith in the health care i would find out what it was. I made it through that semester which looking back on it, i really don't know how.
Once i got home, may of '01, my father took me to some of the first appointments followed by the initial testing. looking for all sorts of random things as i recall. the process was slow and june came around. late in june, the 25th my father passed away and i was so sick. high fever with still no clue what was happening with me. the following week i ended up in the same ER where the doc said i needed to see a surgeon. surgeon said i needed to see a GI cause from the fistula he suspected crohn's. GI said certainly crohn's but we'll confirm with a colonoscopy. depression really set in!
started on asacol/metradiodizol(flagyl) all just a few days before my 21st birthday... at this point i was ready for a drink but that whole no drinking on flagyl. i continued these drugs thoughout school and they didn't do anything to control anything. fevers those last couple of years and battled that fistula which was always infected. i graduated with honors non the less with BS in equine science ,minors in philosophy and psyc.
came back home '03 still very sick till...short version:
started Imuran in '04 which caused pancreatits.. 4 days and nearly died.
had to wait 6 months for health insurance change(as i was being kicked off my moms plan, cause that's how it use to be) to start remicade in '05.
took 8 months but fred went away and i felt pretty good. '05-'12 i had pretty much been in remission and was simply living life.
since then my dosage has been increased and the remicade seems to be failing. been flaring ever since and had a scary week back in march. the remicade seems to only be lasting a couple of weeks, followed by 6 bad wks. this last cycle i was in for a colonoscopy which i think really caused fred to come back. just had a TX this week and it turned me around quick and feeling good. I've also started on entocort. wonder if i only have another week to feel good. if the fistula is going to get bad again or was it just the colonoscopy that messed it up?
kinda worried i'm not going to make it through... i'm getting married june 9th and really just want to feel halfway ok for it.
apologies: for absurd length, random thought pattern and spelling. horse trainers and spelling/writing not our forte in general.
I went off to college to acquire a degree in equine science, where the focus was horse training. my sophomore year fall semester i really didn't feel well. by spring semester i developed a very painful spot, now known as fred, the fistula. Fred was a real issue while riding horses and the pain was rather impressive. the abscess really scared me at the time not knowing what or why it was there. Being the stubborn.... that i am i figured i'd get through the semester and when i got back home where i had a greater faith in the health care i would find out what it was. I made it through that semester which looking back on it, i really don't know how.
Once i got home, may of '01, my father took me to some of the first appointments followed by the initial testing. looking for all sorts of random things as i recall. the process was slow and june came around. late in june, the 25th my father passed away and i was so sick. high fever with still no clue what was happening with me. the following week i ended up in the same ER where the doc said i needed to see a surgeon. surgeon said i needed to see a GI cause from the fistula he suspected crohn's. GI said certainly crohn's but we'll confirm with a colonoscopy. depression really set in!
started on asacol/metradiodizol(flagyl) all just a few days before my 21st birthday... at this point i was ready for a drink but that whole no drinking on flagyl. i continued these drugs thoughout school and they didn't do anything to control anything. fevers those last couple of years and battled that fistula which was always infected. i graduated with honors non the less with BS in equine science ,minors in philosophy and psyc.
came back home '03 still very sick till...short version:
started Imuran in '04 which caused pancreatits.. 4 days and nearly died.
had to wait 6 months for health insurance change(as i was being kicked off my moms plan, cause that's how it use to be) to start remicade in '05.
took 8 months but fred went away and i felt pretty good. '05-'12 i had pretty much been in remission and was simply living life.
since then my dosage has been increased and the remicade seems to be failing. been flaring ever since and had a scary week back in march. the remicade seems to only be lasting a couple of weeks, followed by 6 bad wks. this last cycle i was in for a colonoscopy which i think really caused fred to come back. just had a TX this week and it turned me around quick and feeling good. I've also started on entocort. wonder if i only have another week to feel good. if the fistula is going to get bad again or was it just the colonoscopy that messed it up?
kinda worried i'm not going to make it through... i'm getting married june 9th and really just want to feel halfway ok for it.
apologies: for absurd length, random thought pattern and spelling. horse trainers and spelling/writing not our forte in general.
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. I'm sorry that you have had trouble for such a long time, I hope very much that you are able to find the right medication that puts you back into remission and sends Fred off on his way again. I don't know much about the medication as I'm relatively new to Crohns, but I have read in other threads about the effects of remicade not lasting as long as they once did, it might be worth checking out the sub-forum for treatments and reading the experiences of others to see if you can find your answer there? I'm sorry if this isn't so helpful but I'm sure you will find the help you need 