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Crohn's Disease Forum » Support Forum » Vent Away » It's all a bit poop, if you pardon the pun...


07-02-2013, 11:39 AM   #1
evescott
 
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Join Date: May 2012
Location: Colchester, United Kingdom
It's all a bit poop, if you pardon the pun...

Hey all, hope you are well.

Rant time.

So I'm STILL waiting on even getting a date for my IGAP Flap surgery which is a follow up to my proctocolectomy I had all those months ago.

And while I've been waiting my Crohn's has gotten horribly active and out of control. My IBD nurse was meant to move my appointment forward to next week so as to get me on some kind of Crohn's meds as I'm not at the minute but I tried calling today and a) she's on leave and b) there's no record of it being moved forward as of yet.

I'm getting worse & I know I am, my iron levels are horrible low & the tablets are only helping so much, I've also got two ulcers around my stoma which are, (here comes the graphic stuff) leaking pus and I'm fairly sure one is getting itself into a little state of next stop abscess, despite just completing a course of antibiotics.

Catch 22 as I can't take immunosuppressants before surgery but can't have surgery if I'm this unwell anyway!

What a bleedin' nightmare!
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Diagnosed '06 at Great Ormond St Hospital with Crohn's.
No remission lead to ileostomy in '09.
Still no remission lead to Panproctocolectomy with permanent ileostomy '12.

Pyoderma, arthritis, fistulas & abscesses.

Still no remission.
Started Humira 08/13 & hoping it's my wonder drug!

Past treatment;
Modulen diet, Azathioprine, Mesalazine, Steroids, Infliximab, Methotrexate, Seton insertions etc.


http://digestthat.blogspot.co.uk/
07-02-2013, 02:23 PM   #2
Grumbletum
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You poor thing :-( I'm so sorry you're feeling like this and you must be very frustrated at the delays. Would it be worth seeing if you can get through to your GI's office?
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
07-02-2013, 02:50 PM   #3
evescott
 
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Join Date: May 2012
Location: Colchester, United Kingdom
I am a tad frustrated but after I'd written this post by some sort of miracle the hospital called me back! Appointment Tuesday so hopefully I can get things headed the right way!

Thank you for the support x
07-03-2013, 04:25 AM   #4
Grumbletum
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Great stuff :-) Let us know how things go with the appointment x
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