- Joined
- Aug 2, 2009
- Messages
- 208
Hey guys, havent been posting for a while, tend to dip in and out when i need advice and support, and when i have time off sick from work its good to read all your posts....
...last time i was on was around march, and was having a hell of a time with having been transferred to a different hospital and GI team after having the same GI for 12 years. Basically my flares are becoming more frequent, used to be 2-3 times a year, and i am on number 4 already in 8 months. On max doses of imuran and pentasa and really not feeling a great deal of trust with my new GI team. Had a colonoscopy 2 months ago and where they say they would tell me the results in a fortnight i am still waiting....m
...so i survived my Glastonbury festival experience, first time ever, was pretty awesome, but during my week away i started to bleed and pass lots of mucous, the beginning of a flare. Clearly being in the middle of a field for 5 days couldnt really do much about it, so called my IBD nurse on friday when i got back.
She was really nice, got me started on some asacol enemas but wanted me on a 6 week course of them. That is a bit different from my previous management but still giving this new team the benefit of the doubt. anyway i pretty much stopped eating from saturday, couldnt stomach any food at all and getting quite bad cramps. Had been going to the loo 6 times daily but that stopped for about 24hours after starting the enemas (think i scared my bowel senseless) but started back up again on sunday as before. i had been on night shift as well over the weekend ( i am a nurse for my sins) and was living on lucozade to get me through.
things werent getting better so i called my IBD nurse again today to let her know i havent eaten more than a yoghurt in the past 3 days, and still in a reasonable amount of pain. she said it was probably ldue to constipation even though i told her this was unlikkely as i havent eaten much and my bowels are back to what they were before, it isnt constipated stool.
She told me i havent really given the asacol a chance yet and i should hold tight and wait a couple more days, but as i explained i have had this disease for 19 years and really over the past 8 months everything is changing, i used to be confident managing my flares but now they are so unpredictable. last flare in march i ended up on 8 weeks of pred which i havent needed for years, the flare lasted a couple months, couldnt eat much for a week or two and lost about 5kgs.
she said if i am no better tomoro i should get some bloods done at my GP, which is a joke as there is no chance of an appt til next week. anyway any results wont come through untiil fri then we are on the weekend. and is she saying she will only treat or see me on blood results as opposed to clincal symptoms?
she also said it was just prob because of night shift and the junk us nurses eat to keep us awake...even though i told her i havent eaten for a few days!
my last GI would have seen me by now, at least had someone examine me and give me a plan. i still feel so lost with this system and feel its all about avoiding waiting lists and saving money by not doing much. i dont have many reserves left before surgery and really dont want to be wasting any time.
but thats my rant really.....need to rant sometimes! i really want to sit down to a huge chinese meal but couldnt even manage some jello today...went right through me and cramped the hell outta me! ouchy.....
lost 2kg already and thats not even a week really. something isnt right....thinking i may need to think about asking for change of meds soon cos my current regime isnt really holding it anymore.
really sore and tired and fed up...want my old GI back and the old team..thanks for listening! :ghug:
...last time i was on was around march, and was having a hell of a time with having been transferred to a different hospital and GI team after having the same GI for 12 years. Basically my flares are becoming more frequent, used to be 2-3 times a year, and i am on number 4 already in 8 months. On max doses of imuran and pentasa and really not feeling a great deal of trust with my new GI team. Had a colonoscopy 2 months ago and where they say they would tell me the results in a fortnight i am still waiting....m
...so i survived my Glastonbury festival experience, first time ever, was pretty awesome, but during my week away i started to bleed and pass lots of mucous, the beginning of a flare. Clearly being in the middle of a field for 5 days couldnt really do much about it, so called my IBD nurse on friday when i got back.
She was really nice, got me started on some asacol enemas but wanted me on a 6 week course of them. That is a bit different from my previous management but still giving this new team the benefit of the doubt. anyway i pretty much stopped eating from saturday, couldnt stomach any food at all and getting quite bad cramps. Had been going to the loo 6 times daily but that stopped for about 24hours after starting the enemas (think i scared my bowel senseless) but started back up again on sunday as before. i had been on night shift as well over the weekend ( i am a nurse for my sins) and was living on lucozade to get me through.
things werent getting better so i called my IBD nurse again today to let her know i havent eaten more than a yoghurt in the past 3 days, and still in a reasonable amount of pain. she said it was probably ldue to constipation even though i told her this was unlikkely as i havent eaten much and my bowels are back to what they were before, it isnt constipated stool.
She told me i havent really given the asacol a chance yet and i should hold tight and wait a couple more days, but as i explained i have had this disease for 19 years and really over the past 8 months everything is changing, i used to be confident managing my flares but now they are so unpredictable. last flare in march i ended up on 8 weeks of pred which i havent needed for years, the flare lasted a couple months, couldnt eat much for a week or two and lost about 5kgs.
she said if i am no better tomoro i should get some bloods done at my GP, which is a joke as there is no chance of an appt til next week. anyway any results wont come through untiil fri then we are on the weekend. and is she saying she will only treat or see me on blood results as opposed to clincal symptoms?
she also said it was just prob because of night shift and the junk us nurses eat to keep us awake...even though i told her i havent eaten for a few days!
my last GI would have seen me by now, at least had someone examine me and give me a plan. i still feel so lost with this system and feel its all about avoiding waiting lists and saving money by not doing much. i dont have many reserves left before surgery and really dont want to be wasting any time.
but thats my rant really.....need to rant sometimes! i really want to sit down to a huge chinese meal but couldnt even manage some jello today...went right through me and cramped the hell outta me! ouchy.....
lost 2kg already and thats not even a week really. something isnt right....thinking i may need to think about asking for change of meds soon cos my current regime isnt really holding it anymore.
really sore and tired and fed up...want my old GI back and the old team..thanks for listening! :ghug:
