- Joined
- Aug 2, 2009
- Messages
- 208
Hey guys,
well following on from my changing gastros rant a couple weeks ago....still not feeling fab..
got sick around 5 weeks ago, where there were different mix ups with treatments for various reasons, the biggest being that i am in the middle of changing hospitals and gastros...and am in the middle of the system....not quite got in yet....have been in contact with a gastro registrar last week who is getting me in for a scope on friday finally...after so long!
so i had slight extension of my UC noted on a scope in june last year, same symptoms, passing blood, mucous, not excessive frequency but pain, and loss of appetite. from my usual 10-20 cms afffected colon it had increased to above 40 cms, and that is on maximum pentasa and azathioprine. So knew when i got back to the UK i will prob need to address my meds and look at changing them.
then i got ill there in jan, same symptoms, and started on the asacol then pred foam enemas, then had to move to oral prednisolone on a slow taper, first i've needed to use oral pred in years.
but its been over 5 weeks i've not been right! never been this long before..ever!
But i thought i would feel fab by now!its weds today and i am on my second week of prednisolone, tapered to 35mg on monday. i havent eaten properly in 2 weeks, i mean, i am managing small amounts of soup, or scrambled eggs, or shakes, and plenty fliuds, but nowhere near my usual intake....tried a pitta bread and hummus 2 nights back and my tum just swelled up, felt so bloated and crampy.
i mean the pred has worked in the sense that i have had no blood or mucousy BMs since starting. but i actually havent had any BMs for a few days, my last one was a bit loose and as described in another thread-decorated with pentasa pellets! My tum seems soft and everything, and i sometimes get a but of proximal constipation at the end of a flare, but really am unsure of my flare this time.
can normally set it by clockwork, 4-5 days of poor eating...loss appetite, bloody stools, start treatment, 2 days later back to normal or near enough!but feeling a bit odd cos its not clockwork. i wouldnt say i'm ill from the UC but prob the nutrition part of it...
like i know i am low of energy and feel tired and drained cos i am not eating well, i can make sense of that. I also know that my reduced BMs or lack thereof is because i am not really eating solid food. living on soup yay. and therefore losing weight because of that. but is this the UC or is it just me? am i now not eating cos i am used to not eating or is it still my flare? i am still bloated, but crampy, sore back, have little hunger and when i do it is transient.
it is stress? i feel i could sit and demolish a whole pizza but know i am not hungry for it, so i could eat, i just dont want to? is that weird?
The gastro reg i seen last week said it will take time to get back to normal cos i have spent so long flaring....and i will be seeing someone on fri anyway so can voice my concerns at my colonoscopy.
begin the bowel prep tomoro so only clear fliuds from 8am anyway, so prob lucky i am not that hungry! and that will sort out my BMs, wont be able to stop going to the loo in 24hours!
but just apprehensive i suppose about this change in my disease. the change in the control i have over everything...dont know where its headed, what they will find on friday if anything? and what they are gonna do with my meds, or are they gonna look at surgery again.... in fact what the new gastro team are gonna be like!
and i am still off work, never really had to take so much time off work with this either, feel really odd about that...
i dont know what i am really asking you guys! just wanted to get this all down on screen i suppose, you folk are badass therapists! hugs xx
just fed up, impatient and frustrated!
well following on from my changing gastros rant a couple weeks ago....still not feeling fab..
got sick around 5 weeks ago, where there were different mix ups with treatments for various reasons, the biggest being that i am in the middle of changing hospitals and gastros...and am in the middle of the system....not quite got in yet....have been in contact with a gastro registrar last week who is getting me in for a scope on friday finally...after so long!
so i had slight extension of my UC noted on a scope in june last year, same symptoms, passing blood, mucous, not excessive frequency but pain, and loss of appetite. from my usual 10-20 cms afffected colon it had increased to above 40 cms, and that is on maximum pentasa and azathioprine. So knew when i got back to the UK i will prob need to address my meds and look at changing them.
then i got ill there in jan, same symptoms, and started on the asacol then pred foam enemas, then had to move to oral prednisolone on a slow taper, first i've needed to use oral pred in years.
but its been over 5 weeks i've not been right! never been this long before..ever!
But i thought i would feel fab by now!its weds today and i am on my second week of prednisolone, tapered to 35mg on monday. i havent eaten properly in 2 weeks, i mean, i am managing small amounts of soup, or scrambled eggs, or shakes, and plenty fliuds, but nowhere near my usual intake....tried a pitta bread and hummus 2 nights back and my tum just swelled up, felt so bloated and crampy.
i mean the pred has worked in the sense that i have had no blood or mucousy BMs since starting. but i actually havent had any BMs for a few days, my last one was a bit loose and as described in another thread-decorated with pentasa pellets! My tum seems soft and everything, and i sometimes get a but of proximal constipation at the end of a flare, but really am unsure of my flare this time.
can normally set it by clockwork, 4-5 days of poor eating...loss appetite, bloody stools, start treatment, 2 days later back to normal or near enough!but feeling a bit odd cos its not clockwork. i wouldnt say i'm ill from the UC but prob the nutrition part of it...
like i know i am low of energy and feel tired and drained cos i am not eating well, i can make sense of that. I also know that my reduced BMs or lack thereof is because i am not really eating solid food. living on soup yay. and therefore losing weight because of that. but is this the UC or is it just me? am i now not eating cos i am used to not eating or is it still my flare? i am still bloated, but crampy, sore back, have little hunger and when i do it is transient.
it is stress? i feel i could sit and demolish a whole pizza but know i am not hungry for it, so i could eat, i just dont want to? is that weird?
The gastro reg i seen last week said it will take time to get back to normal cos i have spent so long flaring....and i will be seeing someone on fri anyway so can voice my concerns at my colonoscopy.
begin the bowel prep tomoro so only clear fliuds from 8am anyway, so prob lucky i am not that hungry! and that will sort out my BMs, wont be able to stop going to the loo in 24hours!
but just apprehensive i suppose about this change in my disease. the change in the control i have over everything...dont know where its headed, what they will find on friday if anything? and what they are gonna do with my meds, or are they gonna look at surgery again.... in fact what the new gastro team are gonna be like!
and i am still off work, never really had to take so much time off work with this either, feel really odd about that...
i dont know what i am really asking you guys! just wanted to get this all down on screen i suppose, you folk are badass therapists! hugs xx
just fed up, impatient and frustrated!
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