Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Appointment with GI but fistula closed



07-06-2018, 01:14 PM   #1
Ebru
 
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Appointment with GI but fistula closed

Hello people,

I had an abscess treated at the ER. The GP who refered me had noted it was a sinus pilonidalis (although I was a 18 year old girl with not much hair there) but the physican assistant/surgeon had diagnosed it as perianal abscess.

Looking back, her diagnosis was pretty ridiculous. This caused confusion with the nurses at the department surgery. They had not checked for fistula.

After a few months I had itchiness and discharge around that spot but I didn't got it checked out immediately as I didn't like it. This stopped after a few months until I got some abscess-like pain around my anus, and then I noticed a hole again, and went to my GP.

This was months ago, and the hole closed somewhat and is no longer visible.
The skin behind it still feels odd, and the area is still slightly painful on the inside, and I'm very sure it will just return again.


The thing is, I have an appointment with a GE surgeon to get it checked it, I was refered by a GI/colon doctor who suspects I have Crohn's. And since there's no visible hole anymore I'm afraid he will say that "it has healed, and you can go away." Would this happen, or is it normal that fistulas temporary close?

My own, better GP (not the one who gave me a misdiagnosis) has noted in her referal that it clearly seemed like a fistula though. I just don't trust doctors, afraid they will use the lack of a visible hole (had one though) as a reason to send me home again, and that I will lose my colonoscopy.

Any experience will be appriciated.
07-06-2018, 07:48 PM   #2
cmack
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Tell your surgeon about your concerns. You don't have to point fingers... just say "you want to be sure that this recurring problem is finally fully diagnosed" or something like that. They will listen if they have any feelings. I was very much the main one, or politely dominant, in both listening and firstly asking the right questions with my surgeons. I was politely in control. Write a short list, them make sure when you see them, that each issue on the list has been addressed by your surgeon. Ask whatever you need, it's their job to help people. I hope they help you. You have my support.

Last edited by cmack; 07-07-2018 at 08:39 AM. Reason: editing
07-07-2018, 05:12 AM   #3
Ebru
 
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Tell your surgeon about your concerns. You don't have to point fingers... just say "you want to be sure that this recurring problem is finally fully diagnosed" or something like that. They will listen if they has any feelings. I was very much the main one, or politely dominant, in both listening and firstly asking the right questions with my surgeons. I was politely in control. Write a short list, them make sure when you see them, that each issue on the list has been addressed by your surgeon. Ask whatever you need, it's their job to help people. I hope they help you. You have my support.
You're absolutely right. Thank you for your advice. I should be clear and assertive towards them. But my trust vanished, due to them not being able to properly diagnose stuff even though it seems obvious.

But is it possible that fistulas show temporary healing/closing, but that the inside still hurts although there's no proof for an abscess?
07-07-2018, 08:46 AM   #4
cmack
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I know what you mean about trust, I don't trust easily. Some doctors are great while others... no so much. I think your problem will most likely be discovered upon examination. A fistula can appear closed but then return later, I think the surgeon will understand this and know the signs to look for. All the best.
07-08-2018, 02:13 PM   #5
DCCrohns
 
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You're absolutely right. Thank you for your advice. I should be clear and assertive towards them. But my trust vanished, due to them not being able to properly diagnose stuff even though it seems obvious.

But is it possible that fistulas show temporary healing/closing, but that the inside still hurts although there's no proof for an abscess?
Yes, it is possible for one side of the fistula to heal but the tract be in place. It sounds like based on pain that there is active inflammation and/or infection, so that definitely should be addressed. Have you had a colonoscopy or EUA to more fully assess things? If you have Crohn's the treatment may be slightly different than if not.

Best of luck to you!
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Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara (4 weeks) , Azathioprine (150mg/day)

Surgeries: Fistulotomies & Seton Placements (2011, 2013); Advancement Flap (2013); Temp Loop Ileostomy (2016); Fistula Repair w/ Gracilis Muscle (2016); Fistula Repair (2016); Seton Placement & Stem Cell Harvesting & Stem Cell Placement (2018)
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