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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Seton in situ and Crohns diagnosis debarkle



05-08-2017, 02:23 PM   #1
beane84
 
Join Date: May 2017
Seton in situ and Crohns diagnosis debarkle

Hi,

I have recently been suffering with a Perianal abscess which progressed to a fistula after 6 months of pointless wound packing... I had my abscess drained and for 6 months my nurse practitioner was packing the wound and scratching her head as to why the wound kept tearing open... I did question a few times if the wound could be filling up from the inside to which she replied it couldn't be... oh the bliss of being unaware of my future misery.

So fast forward 8 months and I have had a seton in situ for 2 months and It is supposed to being removed in 7 days.... Has anybody else had a seton removed while the wound is still leaking??? I thought the purpose of the drain was to clear the infection/pus???

I have been tested for Crohns now 4 times... My first test came back as being negative then two days later the same test came back as positive??? Has anybody else had this???? I have been rechecked 3 more times and each time I have not receive a diagnosis It has been lost once and twice I came back as needing a retest due to human error....

I hope there is someone out there who can give me some answers.....

Thank you..
05-08-2017, 02:26 PM   #2
Sorebutt26
Senior Member
 
Join Date: Apr 2017
Location: United Kingdom
Hi,

I have recently been suffering with a Perianal abscess which progressed to a fistula after 6 months of pointless wound packing... I had my abscess drained and for 6 months my nurse practitioner was packing the wound and scratching her head as to why the wound kept tearing open... I did question a few times if the wound could be filling up from the inside to which she replied it couldn't be... oh the bliss of being unaware of my future misery.

So fast forward 8 months and I have had a seton in situ for 2 months and It is supposed to being removed in 7 days.... Has anybody else had a seton removed while the wound is still leaking??? I thought the purpose of the drain was to clear the infection/pus???

I have been tested for Crohns now 4 times... My first test came back as being negative then two days later the same test came back as positive??? Has anybody else had this???? I have been rechecked 3 more times and each time I have not receive a diagnosis It has been lost once and twice I came back as needing a retest due to human error....

I hope there is someone out there who can give me some answers.....

Thank you..
I could have written this myself!

What tests have you had for Crohn's?

I still have my seton at the moment. X

05-08-2017, 02:40 PM   #3
beane84
 
Join Date: May 2017
I could have written this myself!

What tests have you had for Crohn's?

I still have my seton at the moment. X
Just blood tests at the moment.... my GP does not seem to be very informed on Crohns and keeps telling me I have celiacs but he has tested for this 3 times and that has come back as negative each time.

The seton is hopefully going to be gone in 7 days and not a moment too soon....im sure who ever designed this thing could have written the Saw film franchise...what a barbaric piece of kit??
05-08-2017, 02:42 PM   #4
beane84
 
Join Date: May 2017
Also how are people managing to carry on as normal with the seton in place???? Im struggling to work due to pain and sheer embarrassment but then I'm feeling like a fraud by having so much time off??!?!?!
05-08-2017, 03:01 PM   #5
Sorebutt26
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Also how are people managing to carry on as normal with the seton in place???? Im struggling to work due to pain and sheer embarrassment but then I'm feeling like a fraud by having so much time off??!?!?!
Again I'm with you on this one. Although the new seton I have is much more comfortable than the last.

Have you had a Faecal Calprotectin test yet? (Stool sample to measure the levels of inflammation in the colon)

I'm still waiting for results.

I really hope you get some relief after the surgery. What's the plan once the seton is removed?

05-08-2017, 04:32 PM   #6
beane84
 
Join Date: May 2017
No not as of yet just the bloods.... Seton removal and refashioning of hole is scheduled for next week... I was told he would not be trying this procedure as it is only 50% affective but all of a sudden he wants to give it a try...fingers crossed it works.... if it doesn't I will have to have the whole area removed and I don't even want to think of that.
05-08-2017, 04:35 PM   #7
Sorebutt26
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No not as of yet just the bloods.... Seton removal and refashioning of hole is scheduled for next week... I was told he would not be trying this procedure as it is only 50% affective but all of a sudden he wants to give it a try...fingers crossed it works.... if it doesn't I will have to have the whole area removed and I don't even want to think of that.
What type of fistula do you have?

When you say refashioning... What's that? A flap procedure?

05-08-2017, 05:11 PM   #8
beane84
 
Join Date: May 2017
I have no idea of the type...I had a perianal abscess It goes from my left cheek in to my anal cavity.. The surgeon is still not 100% sure what it looks like as each MRI has not given a full picture... The refashioning I have been told entales cutting a piece of my sphincter and using that to plug up the hole from inside
05-08-2017, 05:17 PM   #9
Sorebutt26
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Join Date: Apr 2017
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I have no idea of the type...I had a perianal abscess It goes from my left cheek in to my anal cavity.. The surgeon is still not 100% sure what it looks like as each MRI has not given a full picture... The refashioning I have been told entales cutting a piece of my sphincter and using that to plug up the hole from inside
It seems strange you haven't had my other scans than an MRI to try and get a better picture and understanding of what's going on. How can they plan how to treat it properly if they don't know exactly what's going on?

Have you had a second opinion?

I hope you get some relief and success after your op next week. These things are horrid!

05-08-2017, 06:16 PM   #10
beane84
 
Join Date: May 2017
Seems strange to me too...also I have been telling them at the MRI that only through logics that if there is a cavity between two pieces of fatty/maluable tissue and squeeze it (me lying on my back on the MRI table) then surely the cavity will close up. I had my first MRI with seton in situ on my last one so they will be able to see where this one lies but if there is more than one entry point then we still wont see it.

NHS for you I suppose...

I have only really spoken to this one specialist regarding the situation since the fistula was discovered and I have been informed he supposed to be the best there is... I had seen several people before the fistula was discovered and not really got anywhere.... my GP surgery has not really been much help every time I see one of them they have to google what it is...
05-09-2017, 01:29 AM   #11
Sorebutt26
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Join Date: Apr 2017
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Seems strange to me too...also I have been telling them at the MRI that only through logics that if there is a cavity between two pieces of fatty/maluable tissue and squeeze it (me lying on my back on the MRI table) then surely the cavity will close up. I had my first MRI with seton in situ on my last one so they will be able to see where this one lies but if there is more than one entry point then we still wont see it.

NHS for you I suppose...

I have only really spoken to this one specialist regarding the situation since the fistula was discovered and I have been informed he supposed to be the best there is... I had seen several people before the fistula was discovered and not really got anywhere.... my GP surgery has not really been much help every time I see one of them they have to google what it is...
If he's the best there is, I don't see why be wouldn't have done further tests to get a really clear picture of what he's dealing with.
Has he mentioned using VAAFT at all?

Unfortunately my GPs don't know a great deal about them either and as for the nurses... none of them had even heard of it lol

05-09-2017, 12:52 PM   #12
beane84
 
Join Date: May 2017
So im told...
I haven't got a clue I am merely the patient...

I have never even heard of a VAAFT??!??!?!
05-09-2017, 05:49 PM   #13
Jabee
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Here is some information on VAAFT.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226694/

Have you asked about the success/failure rate of the procedures you've had and are going to have?
05-09-2017, 07:20 PM   #14
beane84
 
Join Date: May 2017
Jabber.. Thanks I did some research straight after I saw the post.

The procedure next up he tells me only has a 50% success rate but he said while he is removing the seton he might as well try it. Which I'm really hoping work as next step he says is to remove the sphincter up to the fistula opening. I'm currently out of sick pay hours so I can't imagine how much unpaid time I'll have to take off for that... it doesn't bear thinking about yet...

sorry for poor punctuation replying on my phone.

Here is some information on VAAFT.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3226694/

Have you asked about the success/failure rate of the procedures you've had and are going to have?
05-30-2017, 09:53 AM   #15
beane84
 
Join Date: May 2017
So the last operation was a waste of time. The surgeon opted for a prostectic plug which has since fell out it lasted around a week and did it hurt when it come out!!???

Also when i woke up i was unable to pass water which seems to be a seperate issue altogether.

Back in on Satureday for investigation under anesthetic for the 4 th time. on my letter it also mentions a seton so it looks like the band is going bac in... id only just got that smell out of my nostrils too.

oh the joy!!
05-31-2017, 01:37 PM   #16
cmack
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I hope the best for you. Having a seton is no fun.
05-31-2017, 01:43 PM   #17
Sorebutt26
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Join Date: Apr 2017
Location: United Kingdom
I hope the best for you. Having a seton is no fun.
It's certainly now! Especially when permanent like mine

05-31-2017, 04:35 PM   #18
beane84
 
Join Date: May 2017
It's certainly now! Especially when permanent like mine
Permanent??? That just doesnt bare thinking about... i feel for you. although it seems like that for me at the min but i know there is an end in sight at some point... i feel for you sorebutt....
05-31-2017, 04:45 PM   #19
Sorebutt26
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Join Date: Apr 2017
Location: United Kingdom
Permanent??? That just doesnt bare thinking about... i feel for you. although it seems like that for me at the min but i know there is an end in sight at some point... i feel for you sorebutt....
Yup! It sucks! thanks.

I hope you get your sorted soon xx

06-03-2017, 10:48 PM   #20
Ihatefistulas
 
Join Date: Oct 2016
beane84,

I am reading your post just now, sorry to hear that your surgery was unsuccessful, but to be honest given your described symptoms (as I understand things), I am surprise that he removed the seton and went with this surgery given it sounds like their was still a lot of active inflammation. Clearly in the end, their was a build up behind the plug and this is what caused it to fail. Now of cause this depends on what you mean by "leaking" as there will always be some degree of leakage with a seton in situ, given the fact that their is effectively an open hole leading to the bowel, but as you describe pain, this would suggest ongoing inflamation.

Just to clarify, there are two types of seton's a cutting seton and a draining seton. I am assuming you are referring to a draining seton (this is a loose seton and designed to keep the fistula tract open for drainage, but not to cut through the tract), given the surgery he attempted, I assume it was a draining seton that he removed, but just to be sure as I only have personal experience with a draining setons.

Your post has a two very big questions, so excuse me if I get a bit lost, but this is some of what I have learned over about 6 years dealing with fistulising crohn's.

Firstly a few things about abscesses and fistulas and crohn's.

* You can develop a Perianal abscess, but not end up with a fistula (I was told fistulas only stay open in 50% of cases)

* If you develop a fistula it doesn't mean you have Crohn's

* Fistulas can take many paths and this will ultimately effect the treatment options (regardless of if Crohn's is the underlying condition) e.g. Submucosal fistula, Intersphincteric fistula, Transphincteric fistula, Suprasphincteric fistula, Extrasphincteric fistula.

Getting a Crohn's Diagnosis

There is no definitive test for crohn's disease. The two most common tests are the CRP blood test (C-reactive protein, which tests for inflammation in the body), and the Calproctitin fecal test (which checks for inflammation in the intestines). From my personal experience and those I have spoken to, the problem with these tests, is a Crohn's patient can be flaring, but still have a normal CRP and even Calproctitin test result. The definitive answer seems to be a combination of symptoms, and biopsies taken during a colonoscopy along with examining blood and stool results. Many patients who have had Crohn's for some time, start their stories with it took 12 months or more to be diagnosed with Crohn's (this was the case with me). One advantage a Perianal Fistulising Crohn's patient has is it is fairly easy to see the cycle and flaring that a Crohn's patient may experience (due to the location of the disease). I literally heard my treating Gastroenterologist and another Gastroenterologist in a side room discuss my case, my symptoms and my medical history including blood results, colonoscopy reports with biopsy results, MRI scans, and a report from my Colorectal Surgeon, before concluding that I had Crohn's disease.

Treatment Goal for Perianal Fistula

The goal when treating an abscess and fistula is to achieve closure while maintaining continence. This is where the path of the fistula becomes critical, as scar tissue can effect continence, and cutting the sphincter muscle will also effect continence, cutting more than 50% will likely result in complete incontinece (my fistula tract unfortunately encompasses too much of the sphincter muscle). This goal becomes even more complicated when the underlying cause is Crohn's disease, as then treatment will involve a team approach, where you Gastroenterologist and Colorectal Surgeon and yourself must work together to manage the disease as well as manage the fistula. The goal here is still the same (closure without compromising function, but also control and remission). It is important that you have a team of specialists who not only work well together and communicate with each other, but also you feel comfortable with and part of the decision making process.

How to close a fistula

A successful closure will only occur where the opening closes from the inside out, that is healing skin when the inside is not healing will simply result in best case the abscess builds a bit, before tearing the freshly formed skin, or worse still, the build up finding a new path and forming a new tract and potentially more scar tissue. In a Non-Crohn's patient this means removing the infection and aiding the body to heal. In a Crohn's patient this means controlling the disease, and removing the infection and aiding the body to heal. This is why diagnosis is important. Aiding the body to heal may include medication, surgery, and also as a patient healthy habits (especially keeping the area clean). I have heard of fistulas closing without surgery once the underlying issue is resolved (in the case of Crohn's patients). It is important to note that complete healing will not occur when a seton is in place, there will always be some discharge and discomfort, but as I am only starting to learn now, you should be able to function almost completely normally with a seton in situ if the infection and inflammation is under control. I have heard stories of people riding a bike with a seton (unfortunately I am not at this stage yet, but I am now back to full time work, which is a physically demanding job, where 6 months ago this would have been impossible).

The most common forms of surgical intervention are as follows:


* Fistulotomy - laying the tract open and scraping the tract. The location of the tract is important, for example I only had a partial fistulotomy (as a full one would have rendered me incontinent). My first partial fisulotomy was performed prior to being diagnosed with crohn's, this resulted in a lot of scar tissue forming, and was likely instrumental in a lot of my issues over the following years (the latest partial fistolotomy was actually performed more to remove old scar tissue which was creating pockets for infection to hide. The healing from this second surgery formed far less scar tissue, as my Crohn's was being managed by medication.

* Seton placement - either cutting or draining. The purpose of the first is to gradually cut the tract and allow healing behind, the seton eventually cuts fully through. A draining seton is designed to allow infection to drain and a defined tract to develop, it can also assist with determining the path under an MRI. Some may opt eventually to keep their setons in (this is one option I am considering, now I realise that it is not meant to be an agonising and life altering thing). One of my main reasons for considering this option is that I have had setons removed before and I am not sure that I want to risk things returning to how they were, but this is not a decision I have fully made yet.
* Other options include Advancement Rectal Flap, Fibrin Glue or Collagen plug, VAAFT, temporary ileostomy, permanent ileostomy, and others (I won't go into any detail on these as I have no personal experience with them, but a quick search will give lots of information).


What does the surgeon need to know first:

* Is their an undiagnosed underlying condition eg. Crohn's disease. This is not to say a surgeon can't proceed until all patients are either diagnosed as Crohn's patients or found not to have Crohn's, but this should be something they should seriously consider, especially now that your first operation has failed.
* How many tracts are their and what paths do they take
* Is the abscess drained and is their any ongoing inflammation
* Does the patient understand the risks, complications, and probably success rate of the surgery
* Does the patient understand what the alternatives to this treatment are, and why the surgeon is recommending this approach

I hope this goes some way towards being helpful advice. The best advice I can give is think of any questions you may have, and write them down before your next appointment. Don't feel rushed and if you don't understand something ask again (these are two things I did very poorly initially, and I found that as I couldn't understand what was going on, my specialists started making decisions without involving me, eventually even my colorectal surgeon recommended getting a second opinion).

All the best to everyone for the future,

Cheers,

Cameron

Perianal Crohn's with 2 setons in situ, on Humira weekly (one compassionate dose), Imuran, allapurinal. diagnosed about 5 years ago, original symptoms 6 years ago (although I really should check the dates as I think it may actually be getting closer to 6 1/2)
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