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, [FONT="]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).[/FONT]
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,
[FONT="]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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