Hey everyone! I'm posting here as google is really not bringing up much (not that I go off google but usually brings me to a thread on here!) I have Crohn's - 30 years now (I'm 38). Been in remission 20 years after small bowel resection. Started flaring last year, did a bout of steroids, started aza & was ok ish. Christmas got norovirus which totally kicked everything off. Docs said it was bile salt malabsorption & not crohns as bloods were ok & MRI in October was normal. Put me on Questran & Imodium. Continued to deteriorate so come Easter had lost 35 lbs couldn't eat at all & was in agony. Ended up in ER said liver was messed up cos of the azathioprine & had slight swelling of small bowel but colonoscopy & endoscopy was normal. Anyho, was admitted for a week, started on predisolone 40mg & within days started to feel better. Came home, started on taper & at 30mg ended up back in hospital again. This time they said I'm just constipated and can't start on any crohns meds til
I've had pill cam as my fecal was over 600, came down to 420 on steroids, but no sign of inflammation anywhere on MRI (did another one on first inpatient stay) so consultants being "difficult " basically saying it's just constipation (even tho i was having constant diarrhoea) and made me do a moviprep. So did that got discharged again but was back on 40mg of pred plus I'd had IV steroids as inpatient. So had pill cam cpl wks ago, was on taper of pred got down to 15 (due to go to 10 on cpl days) and was really unwell. Couldn't eat, tummy ache & major diarrhoea again. So back up to 40mg I went again. Now sitting at 40mg & although I'm tolerating food & feeling a lot better than I was, I still have tummy ache & diarrhoea (just mildly in comparison) so does that mean that it's actually not my crohns after all as I thought the pred would make all symptoms disappear completely? I'm still not on any other med as waiting to see gastro pharmacist in 2 wks but worried that this is as good as it's gonna get? That I'm still too scared (and tired) to leave my house & I have two children to deal with (single mum) and just wanna feel "normal" for them. I've totally rambled on here but any input is muchly appreciated. I'm just hoping that it is crohns (know that sounds crazy but at least I know what I'm up against & there's light at the end of the tunnel) & they'll start me on something to help that & get me off the pred once & for all... Totally sorry for the long ranting post
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I've had pill cam as my fecal was over 600, came down to 420 on steroids, but no sign of inflammation anywhere on MRI (did another one on first inpatient stay) so consultants being "difficult " basically saying it's just constipation (even tho i was having constant diarrhoea) and made me do a moviprep. So did that got discharged again but was back on 40mg of pred plus I'd had IV steroids as inpatient. So had pill cam cpl wks ago, was on taper of pred got down to 15 (due to go to 10 on cpl days) and was really unwell. Couldn't eat, tummy ache & major diarrhoea again. So back up to 40mg I went again. Now sitting at 40mg & although I'm tolerating food & feeling a lot better than I was, I still have tummy ache & diarrhoea (just mildly in comparison) so does that mean that it's actually not my crohns after all as I thought the pred would make all symptoms disappear completely? I'm still not on any other med as waiting to see gastro pharmacist in 2 wks but worried that this is as good as it's gonna get? That I'm still too scared (and tired) to leave my house & I have two children to deal with (single mum) and just wanna feel "normal" for them. I've totally rambled on here but any input is muchly appreciated. I'm just hoping that it is crohns (know that sounds crazy but at least I know what I'm up against & there's light at the end of the tunnel) & they'll start me on something to help that & get me off the pred once & for all... Totally sorry for the long ranting post
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