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IBD sufferers

(10 Posts)
Tippytappytoes Tue 21-Mar-17 19:51:18

Diagnosed with acute u/c, totally colectomy, stoma then pouch etc. Mostly good health with a few pouchitus outbreaks over the years. I'm fairly low maintenance (on no medication) and have a history of underplaying (and maybe not realising) how ill I am. I suppose I feel like I don't want to waste people's time.

My dilemma is this. Currently I am suffering with joint pain and muscle aches in my arms and fingers and my stomach lining and guts feel inflamed and oddly, my eyes hurt. It all kicked off with hot flushes and shivers and general weakness. It's been a couple of days now. Do I go to my GP first or directly to my IBD Team?

MollyHuaCha Tue 21-Mar-17 20:45:55

I'd go to both. Maybe you need your meds increasing. Or it cd be unrelated? Joint probs and eye probs suggest an auto-immune response to me. Hope you feel better soon. flowers

Tippytappytoes Wed 22-Mar-17 10:27:44

Thanks Molly. Appointment made with GP and message left on IBD Team answering machine.

MollyHuaCha Wed 22-Mar-17 20:33:48

Good luck smile. My IBD team are lovely, but completely overworked, understaffed, underfunded etc. I sent an email 3 days ago to say I'm having a Crohn's relapse. I received an automated reply to say someone would get back to me within 5 working days. Still waiting and I'm just getting worse all the time sad

JessicaEccles Thu 23-Mar-17 16:31:53

I am having the same problems at the moment - IBD with scleroderma. It does sound like autoimmune but I can't always tell the difference between a flare and a virus.

Tippytappytoes Fri 24-Mar-17 19:02:07

Well I'm still suffering, they thought it was probably viral but surely it would've come out by now? I am functioning only because of paracetamol and ibuprofen. I'm back at the GP's on Monday.

Molly and Jessica flowers to you both and I hope you both feel better soon.

MollyHuaCha Fri 24-Mar-17 19:53:52

Tippy and Jess, hope you feel heaps better very soon.
My IBD team got back to me. I've increased my medication and have had my next Infliximab appointment brought forward (slightly).

These are for us:
winewinewinecakecakecakebrewbrewbrew

JessicaEccles Sat 25-Mar-17 10:49:46

I'll have to just have a bit of cake and the tea! God I miss winesad

gobbin Sat 25-Mar-17 13:37:17

Tippy are you allowed to use ibuprofen? I'm not as I have Crohns and it may be different with UC/post surgery, but it may be irritating your remaining small bowel?

Tippytappytoes Sat 25-Mar-17 14:14:56

Molly I will take a small slice of cake smile thank you.

Jessica Double cake then!

Gobbin Technically no, but it was decided that it was better for me to take it sparingly than to have to keep taking Tramadol (which I am not a big fan of anyway). I'm intolerant to codeine, it makes me very ill. Mostly I try and stick to paracetamol but sometimes the pain gets too waring and I just need a little break.

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