Hi, just wanted to introduce myself. I live in the UK so hope it is ok to join your forum but you seem to have much more info than we have over here. Anyway, dx with Crohn's in 1989 aged 18 after 18 months of worsening symptoms. Various drug treatments which I cannot remeber names of as so long ago but none worked and so had first op to form a loop ileo in April 1992. The loop pulled back in on itself and so end ileo performed Dec same year with colon left in place. Originally they thought may be able to reattach but colon so badly diseased that couldn't.
August 1995 developed abcess around stoma internally and had to have ileo resited and they put me on azathioprine at that time as had been having yearly flare ups from first surgery but was so much easier emptying a bag instead of running to toilet and breaking land speed record! Everything settled down until 1999 when colon decided to produce discharge and give symptoms as if still attached so this along with rectum etc was removed Oct of that year.
Then became pregnant following March even though didn't think I would be able to get pregnant due to scarring and adhesions. Sadly, wasn't to be, our only child stillborn at 30 weeks and then found out had antiphospholipid syndrome as well.
Everything settled down until 2004 when had massive flare up following anti inflammatories for a neck injury. Caused another abcess around new stoma site and two strictures. They surgically drained abcess in April but it kept reforming and then spent 4 months whilst they argued whetehr to send me for a scan at other end of country as that was the only scanner at time in UK that would give them enough detail to see where abcess was originating (good old NHS). This debate was cut short when obstruction meant emergency surgery to sort out strictures and where they founbd out what they thought was small abcess was completely wound around stoma. Couldn't resite again so had to do some pretty impressive reconstruction surgery to keep it where it was.
Took a few months to get over that but all quiet til last year. After being on azathioprine for 15 years and being in remission for the magic 5 year period, recommended I come off of it. Wish I never had, things gradually got worse over last year and have been off work since middle last November with flare up. Even with ileo bag, having to empty it up to 25 times per day and usual steroids won't calm it down. So have now started Humira, first large dose was last Wednesday and some small improvement but waiting for miracle to kick in.
I also have arthritis, antiphospholipid syndrome, reduced kidney function, stupidly low blood pressure, asthma, skin rashes (not convinced it is ezcema), fatigue, 6 damaged discs in neck (from neck injury at work) and have been through IVF which didn't work and they have no idea why as blood tests showed drugs should have worked perfectly but they didn't. And that's the thing, firstly all my illnesses are immune system related so obviously my body hates me. Not sure what I did to upset it and have taken it out for meals and holidays but still seems to have some sort of grudge! lol The second thing is my body doesn't seem to show symptoms you would expect, like when I had abcess, peritonitis and septecemia I have no temperature, swelling of any medical signs anything wrong except pain and thankly my GP belief that I knew something very seriously wrong.
I still work (when not in flare up mode) full time and luckily am successful in a demanding job but with economy what it is doesn't stop me being concerned about being off. I absolutely refuse to give into this thing, as my husband will willingly confirm 'stubborn as a mule' doesn't come into it.
I have a question concerning Lupus which I will put on another thread as this one is long enough but wanted to introduce myself and my history so far. Thanks in advance.