Sorry if this is a repeated post here - but I would really welcome your feedback!
I was diagnosed with proctitis in 1997 and UC in Aug 2006. Since Aug 2006 I have flared constantly and bled every single day apart from a few weeks when on very high doses of prednisone. I have been hospitalized. I have left sided to my splenic flex - and it is still spreading.
None of the drugs work (apart from high dose pred which I refuse to live on) and I do not want to take Remicade or the like because I am very concerned about
the long term consequences for the immune system and I don't think it is well enough researched (particularly long-term issues). Of course - I completely understand why people do take it!
I am on LDN with little help :(
I am very anemic and my iron levels are way down.
Some times I run to bathroom over 20x/day. I have 'accidents'- quite alot. Most of my BMs are blood/pus.
I am exhausted all the time - apart from when on Prednisone :)
I can no longer work full-time. I am 34.
I have changed my diet, etc, etc.
Surgery - I am quite keen - but my surgeon think that given my frequent incontinence and spinal cord damage (from accident as a child) J pouch might not work and I would need the perm bag.
My question is - from your experience - even if I had the permanent bag or poss a K pouch - is it likely that I would feel alot better (exhaustion, etc) and that would make up for it?
Also, do the other symptoms go away (skin probs, eye problems, arthritis symptoms in hands, lower back, etc)?
Thanks so much for any thoughts.
Diag proctitis 97
Major flare and extension to left sided colitis Aug 2006 - present
I have bled every day since Aug 2006 (I quit smoking in June 2006)
Imuran (Azathioprine) game me liver damage.
Was on lots Asacol and mesalazine enemas - now seems to be making worse.
Back on Prednisone :(
Too scared to try Remicade due to long-term worries
Concidering surgury. Am very fed up.
Post Edited (Clicky) : 12/5/2009 12:54:26 PM (GMT-7)