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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » New fistula opening- bad??



03-06-2015, 10:30 AM   #1
Elizajp
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New fistula opening- bad??

So I have had a fistula for a year now- four setons- two which drain a lot and two which are about to be taken out. I have found a treatment that has been decreasing the pain and drainage and last time the CRS looked she said it's getting better. Anyway; today I noticed a new opening that is a little red spot that is draining separate from the setons but right next to them. I'm kind of freaking out as I thought everything was healing. Does this mean things are much worse? Or could it just have been something trying to break through all along? And will I need a new seton? I've never had something break through the skin/ it's always been a deep abscess. I'm seeing the CRS Later today but kind of freaking out and wanted to see if anyone had any info.
03-07-2015, 09:27 AM   #2
Sailorluna
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It could be a new track from an existing fistula. I have had similar and they just opened it up to the other fistula and cleaned it out. It left me with just the existing seton. I have also had it go the other way. It looked like a new track from something that already existed but when they explored it they discovered it was completed separate.
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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

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Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
03-07-2015, 11:50 AM   #3
Mandalee
 
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Sorry you are dealing with this ElizaJP! How did the appt go & What did the CRS have to say about it?
I have also had fistulas open at the skin and other openings form right next to each other. My CRS drew a diagram for me once that showed it could be either a separate one slowly forrming along with the other in a different tract or it could be from the same spot in the intestine, following the same tract but then braching off right under the skin to a new opening. I hope that makes sense. Its hard to explain without the visual drawing he did. I had no additional problems caused by it and since it was open and draining he said it was of no concern to him. They all just eventually closed up too, even the small ones that formed later. Not sure why honestly, but it was right before i was scheduled to have a resection and went off all meds and they just closed and never came back - knock on wood!!!!
03-08-2015, 03:49 PM   #4
Elizajp
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I had to see the nurse practitioner. She said it is probably the same fistula but that it could be something separate. She just wants to watch it. So we will see!

@Mandalee you say you went off all meds and they never came back? That's awesome! Are you doing anything to treat them like diet or supplements? I'm not on meds either except LDN and I'm doing an alternative immune treatment that seems to be working but slowly. I'm always open to alternative stuff!
03-09-2015, 06:27 AM   #5
Sailorluna
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They don't want to do an mri or anything? they just want to wait to see if it gets infected or goes away? Did the NP consult with the CRS?
03-09-2015, 06:29 AM   #6
Elizajp
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Yeah the CRS is supposed to call me today. im going to ask her about an MRI. It seems that would make a lot of sense at this point.
03-09-2015, 01:57 PM   #7
Mandalee
 
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I had dealt with them for years but couldn't bring myself to do the Seton because I could keep them draining on my own to prevent an abscess. But it was when I went off everything they closed- Nope, no suppments. I honestly have no idea why they closed but so thankful! I had been on Rowasa (mesalamine) enemas that kept them open, and infection free prior to going off that & Humira.
My Crohns is active again and ulcers are back I just started Cimzia. I'm hopeful it's just a thing of the past and I stay fistula free. Fingers crossed! & for you too
03-10-2015, 02:47 PM   #8
Elizajp
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So I talked to my CRS and she says that she thinks the problem may be that I have too many setons keeping things open when they are trying to heal (she noticed some healing last time she looked and wanted to take two of them out soon.) Anyway, she plans to do another EUA next week to take all setons out and place one that somehow connects to the new spot from the outside? Not sure how that's gonna work.. I like the idea of getting setons out and it makes sense to me that they might be keeping things too open because my crohns digestive symptoms are very much controlled. I just have random bouts of very painful drainage from the setons after using the bathroom. But I'm sort of apprehensive about having yet another surgery...

I asked about an MRI but she said she was quite confident that it's all connected given that the new spot is right next to the setons and that there is no need for an MRI. But I'm wondering if an MRI would be a less invasive option than jumping right to surgery..

Any advice?
03-10-2015, 05:36 PM   #9
Sailorluna
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my crs was positive my last one was connected too. It wasn't. The new track is very deep and not connected. You may want to push for the mri
03-10-2015, 09:08 PM   #10
Elizajp
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Yeah I figured I probably should. I'm also so tired of this all and want to make sure they know exactly what they are dealing with.

What does this kind of MRI involve? Do you have to do contrast? Fast? Does it involve any excessive bathroom trips? I have been avoiding a colonoscopy or anything that involves any prep or clean out because with the setons, as I'm sure you know, diarrhea is absolute hell. So that makes me a little nervous... But if all the MRI is is being in a machine for an hour I couldn't care less.
03-11-2015, 06:25 AM   #11
Sailorluna
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no scope style prep for an mri. I think there is a short fast (starting midnight day before or something) then drinking contrast and partway through they will do injected contrast. It's not bad.
04-07-2015, 05:33 AM   #12
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So I talked to my CRS and she says that she thinks the problem may be that I have too many setons keeping things open when they are trying to heal (she noticed some healing last time she looked and wanted to take two of them out soon.) Anyway, she plans to do another EUA next week to take all setons out and place one that somehow connects to the new spot from the outside? Not sure how that's gonna work.. I like the idea of getting setons out and it makes sense to me that they might be keeping things too open because my crohns digestive symptoms are very much controlled. I just have random bouts of very painful drainage from the setons after using the bathroom. But I'm sort of apprehensive about having yet another surgery...

I asked about an MRI but she said she was quite confident that it's all connected given that the new spot is right next to the setons and that there is no need for an MRI. But I'm wondering if an MRI would be a less invasive option than jumping right to surgery..

Any advice?
I think it is better to understand the anatomy of your fistula. Your CRS should be able to explain. For e.g. How may internal and external openings do you have? If you have more than one seton, it must mean you have more than one external (and internal) opening. Where is your abscess located? Is it a rectal abscess or anal abscess? What is the distance between anus and internal opening(s)?

Knowing the anatomy will empower you to critically analyze your treatment choices.
05-17-2015, 07:32 AM   #13
justbreathe8
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I totally understand your apprehensions with the colonoscopy. I had the same worries when I had 3 setons. My surgeon actually did my two colonoscopys when I was due to have surgery to have them cleaned out. That way, even if the diarrhea really bothered me or caused any problems, the surgeon would be in there the next day to check things out anyways. Just something to think about
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