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03-02-2014, 02:19 PM   #1
x0lou0x
 
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Location: Liverpool, United Kingdom

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First fistula questions

I was diagnosed with Crohn's a year ago this month, (1st anniversary, joy)
I suspected I had a fistula back in october as my rectum hurt and it was very uncomfortable, so I had a look (crohn's makes you do weird things) and there was a hole! so i went to my gp who said and i quote "that isn't a fistula it is a small cut, fistulas are very large holes"
she gave me cream with a painkiller etc in it to put on my rectum to clear the fissures, all the other fissures went and the hole stayed...
anyway i went back to a different gp and said i need to see my consultant
the consultant confirmed it is a fistula and sent me for an mri which i had on Jan 20th
I havent heard anything back from this as of yet and the fistula hole looks bigger.
I am only on pentasa, not been prescribed anything for the fistula
so my question is... do i just now have to live with this? the consultant really didn't seem concerned or offer me any antibiotics...
second question is i was diagnose with crohns ileitis, but as the fistula is in my rectum does this mean I have been having inflammation in other places? and is it likely i'll get more fistulas?
03-02-2014, 03:38 PM   #2
pink&green
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Sorry you are having problems with fistulas sending your way. Hubby has been dealing with perianal fistulas since 2005 he's had them lanced, sections and surgical removed and those sucker keep coming back he says taking sitz bath does help him with the discomfort.
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Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
03-02-2014, 05:17 PM   #3
Grumbletum
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I was going to say Happy Anniversary, but it doesn't seem appropriate somehow! I've not had this type of fistula, but - judging from reading about other experiences on the forum - I'm a bit surprised that you weren't given any medication, at least antibiotics to treat it.
How is the discomfort now that the fissures have healed?
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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
03-03-2014, 05:49 AM   #4
x0lou0x
 
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I keep getting stages of having lots and lots of fissures at the same time which are extremely painful, these then clear at the same time and then come back at the same time,
I don't really know why,
I have been having quite a bit of discomfort and pain and due to living in a shared university house I don't have a bath and would feel awkward taking a sitz bath so I have just been putting up with it
will the fistula go away by itself?
03-03-2014, 03:04 PM   #5
Sailorluna
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To answer your earlier question - it is pretty likely that you are having rectal inflammation.
Mine started in the ileum as well then started to act up in the rectal area and that brought on the fistula. If you don't want to take the baths you can at least sit on a heating pad - it will help it feel better and encourage draining, but it does not keep it clean of course so that may be an issue.

I don't think it is possible for a fistula to go away by itself in a person with crohns. Have you seen a colorectal surgeon? They really are the experts on this stuff.
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
03-03-2014, 03:17 PM   #6
x0lou0x
 
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Thank you for your post, I am keeping the fistula clean through showering a lot
I've never seen a colorectal surgeon i have only seen a registrar about my fistula, I think I am going to ring my consultant tomorrow as I've been in excruciating pain and have been having lots of blood and mucous, also i'm coming to the end of my prescription of pentasa and I don't want to not be on any medication as last time I came off it I was really ill
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