hi everyone... so...i guess i start with my whole deal. i'll try to keep it brief:
in 2005, i started feeling crummy, but chalked it up to heartburn. that never really went away and it gradually grew to terrible pains, finally coming to a head sometime in Fall of '05. i went to the ER, where i was admitted. pain meds, x-rays, blah blah blah...appendectomy. released a few days later, only to be back in the hospital about 3 weeks later. this went on for a while--hospital stays of about 4-5 days, followed by 3-4 weeks of things being sort of okay. i started seeing a GI, he was kind of a d*ck, didn't believe what i was telling him, accused me of being a pain pill addict (i was 25 and living in Baltimore; if it was drugs i'd wanted--i wouldn't have needed to go through the trouble of hospital stays...!)
anyhow, that GI reluctantly sort of Dx'd me with Crohn's, started me on all sorts of meds, as well as Remicade. after my second infusion, i developed a terrifying allergic reaction (throat closing up, etc., etc.) and was pulled from that.
the symptoms grew worse, i began developing all sorts of other issues, by this time i was out of work on disability, jacked up on prednisone and pretty miserable. during a visit with my GP, where i was complaining of persistant UTI symptoms, i submitted a urine sample that ended up looking like a cup of sludge. thankfully, my GP was my fairy godmother and referred me to a wonderful Urologist, who then referred me to an amazing GI. they started to sort me out: i had a fistula to my bladder, along with some pretty messed up guts. in april 2006, i had a resection, where about 7 inches of my small intestines were removed. things looked a bit better, but after a few months, i was feeling awful again and was back in the hospital. my GI and urologist met with my colorectal surgeon, and together they decided that i needed another resection--as the fistula never really got resolved and was back with a nasty vengeance. around this time, they also discovered that i had some ovarian cysts that weren't going away, so i was referred to a gynecological oncologist, for fear that i had some sort of crazy business going on in my lady parts. i also was seeing an infectious disease specialist, for some sort of VRE or C-Diff (my new best friend) that just wouldn't go away.
i was put on TPN for 6 weeks, and in November 2006, i had my second resection, as well as surgery on my bladder so as to remove the fistula completely. after a horrendous recovery (catheters are terrible and the thought of ever having one again is enough to make me want to hurl myself from a cliff or something -- kidding, sort of...), i finally healed and seemed to be in relative remission for the past several years.
...which brings me to today. just heard back from my GI that my recent MRE showed the disease is active again and i've been feeling pretty terrible for the past month or so...
so now i'm back and coming to terms with the fact that i DO still have crohn's (i think i'd convinced myself it was all just a bad dream).
glad to be here, and hopefully find some comfort/inspiration from you folks.
(sorry, i guess that wasn't brief at all.) :shifty:
in 2005, i started feeling crummy, but chalked it up to heartburn. that never really went away and it gradually grew to terrible pains, finally coming to a head sometime in Fall of '05. i went to the ER, where i was admitted. pain meds, x-rays, blah blah blah...appendectomy. released a few days later, only to be back in the hospital about 3 weeks later. this went on for a while--hospital stays of about 4-5 days, followed by 3-4 weeks of things being sort of okay. i started seeing a GI, he was kind of a d*ck, didn't believe what i was telling him, accused me of being a pain pill addict (i was 25 and living in Baltimore; if it was drugs i'd wanted--i wouldn't have needed to go through the trouble of hospital stays...!)
anyhow, that GI reluctantly sort of Dx'd me with Crohn's, started me on all sorts of meds, as well as Remicade. after my second infusion, i developed a terrifying allergic reaction (throat closing up, etc., etc.) and was pulled from that.
the symptoms grew worse, i began developing all sorts of other issues, by this time i was out of work on disability, jacked up on prednisone and pretty miserable. during a visit with my GP, where i was complaining of persistant UTI symptoms, i submitted a urine sample that ended up looking like a cup of sludge. thankfully, my GP was my fairy godmother and referred me to a wonderful Urologist, who then referred me to an amazing GI. they started to sort me out: i had a fistula to my bladder, along with some pretty messed up guts. in april 2006, i had a resection, where about 7 inches of my small intestines were removed. things looked a bit better, but after a few months, i was feeling awful again and was back in the hospital. my GI and urologist met with my colorectal surgeon, and together they decided that i needed another resection--as the fistula never really got resolved and was back with a nasty vengeance. around this time, they also discovered that i had some ovarian cysts that weren't going away, so i was referred to a gynecological oncologist, for fear that i had some sort of crazy business going on in my lady parts. i also was seeing an infectious disease specialist, for some sort of VRE or C-Diff (my new best friend) that just wouldn't go away.
i was put on TPN for 6 weeks, and in November 2006, i had my second resection, as well as surgery on my bladder so as to remove the fistula completely. after a horrendous recovery (catheters are terrible and the thought of ever having one again is enough to make me want to hurl myself from a cliff or something -- kidding, sort of...), i finally healed and seemed to be in relative remission for the past several years.
...which brings me to today. just heard back from my GI that my recent MRE showed the disease is active again and i've been feeling pretty terrible for the past month or so...
so now i'm back and coming to terms with the fact that i DO still have crohn's (i think i'd convinced myself it was all just a bad dream).
glad to be here, and hopefully find some comfort/inspiration from you folks.
(sorry, i guess that wasn't brief at all.) :shifty:
Last edited:
oo:
