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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Post Surgery Fistula Care in the UK - Private nursing?



08-07-2013, 07:49 AM   #1
mehtadone
 
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Location: United Kingdom
Post Surgery Fistula Care in the UK - Private nursing?

Hi,

I'm due to go into hospital for, I think, my 5th fistula surgery. Its quite a complex fistula and I'm coping pretty well.

The issue is that each time, my surgeon recommends daily packing of the wound and is adamant that it makes a huge difference to the fistula properly closing. This is fine for the first few days, but in the UK, the district nurses then refer me back to my GP and I have to book appointments with the nurse which is at odd times.

I want to resume a normal life and routine as soon as possible, but this makes it extremely difficult. I would pay to go to a nurse or have some someone come round at a set time per day so I can build my routine up around it.

Does anyone know of how this maybe possible in the UK (Greater London specifically)?

Thanks,
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Diagnosed Crohnie 1990, Age 9.
Steroids, Diets, drugs etc
2001. 1st Resection - Feeling great.
2007. 2nd Resection - Feeling great again!!
2011. Fistula found. Bum surgery ongoing

Current meds
Traditional: Humira, 50mg Azathioprine, Calci-chew Forte D3
Supplements: Multivitamin, VSL

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08-07-2013, 01:03 PM   #2
Grumbletum
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You poor thing, you must be so utterly fed up with these reoccurring. I'm afraid I'm not sure about the nursing question but think it might be information that you could get from the Crohn's and Colitis website?
http://www.crohnsandcolitis.org.uk/
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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
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08-09-2013, 08:41 AM   #3
Lisa
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May I ask how long you have been on Remicade? Is it not working to close the fistula?

Sorry I can't help with the nurse question - but hope you get that sorted out and all goes well!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
08-09-2013, 08:43 AM   #4
mehtadone
 
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No, I'm on humira now actually. Need to update my signature. It didn't work to close the fistula but my surgeon said that it wouldnt work until we open up all the tracts of the fistula. It was the second most complex one he's seen he said

I emailed the crohn's and colitis website regarding nursing. WIll update on here if I hear anything.
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