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I’m sorry for taking up so much of this forums time & space, but not sure who else to ask & I’m beginning to loose faith in the uk’s gastroenterologist team so not even going there. For those that are new to my (long sorry arsed) story.
Had Crohns 30 years
Small bowel resection 20 years ago - remission until approx 2 years ago.
Started pred 2 years ago - caused cushings
Started aza caused liver troubles
Battled my way on to Humira, didn’t work
Started infliximab - allergic reaction
Due to start stelera - halted due to rapid growing cancer cells of cervix
Undergoing full hysterectomy within next 4 wks
Had pill capsule 3 wks ago - showing normal.
Bloods ESR/WBC All raised
Stopped budesonide 2 wks ago as gastro said don’t need to be on any meds right now & will review me in OP. App was yesterday- got cancelled as apparently he’s gone on annual leave! Next appointment was booked for end November (yes you heard right - November). Called secretary to complain who rebooked me for end June.
Meanwhile symptoms slowly creeping back in. Loss of appetite, pain/cramps, diarrhoea, nausea, exhausting/fatigue. Also have major facial rash (not sure if crohns related but it’s really bad). Anyway jump forward to this wk and start getting pain in stomach area, feels a bit like a babies head is pushing on it. Can barely eat, extremely nauseous, pain making me shivery, faint & so forth. Saw GP Wednesday who said thinks steroids have caused an ulcer in my stomach? Starts me on don peridone & tells me to up my PPI. Do this, then come this afternoon pain & nausea so bad end up calling 999. Two lovely paramedics come out do obs (all fine) and say only way to confirm stomach ulcer is gastroscopy & GP needs to do referral. Said I could go in but would probably get sent home again. So they called GP who arranged to see me later on. Saw her & she said again obs are fine, stomach soft & only thing she could think of is crohns flaring again given I’ve now come off everything. So she’s put me back on budesonide (which gastro didn’t really want but I was happy with as anything to feel better & be able to look after my kids). So now I’m laying here (in bed as still sick) wondering if it’s possible for CD to jump around the GI track? I’ve always had primarily small bowel CD, and on occasion colon along with mouth & throat ulcers, but now I’m wondering if it’s flatted a bit In my actual stomach? Is that possible or does it really stick to the same part of bowel after 20 years? I just don’t get how I’ve gone downhill so quickly after finishing steroids - I was literally only ok for like a wk after finishing them and bam I have the paramedics out! Yet my GI says my CD is fine?? I’m so lost! 😞😞
And if you’ve managed to get this far & are still with me I really appreciate it! It’s so hard dealing with this illness & I do it on my own . I don’t let on how bad it is to my kids (especially my eldest as she worries so much), and my poor mum has enough to deal with without me stressing her out! If anyone can help me out again then thank you, and if not, no worries just thanks for taking the time to read it XX
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