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Crohn's Disease Forum » Your Story » Upcoming Fistula Surgery, Stage 2, Need Help Please!


03-23-2008, 03:22 PM   #1
Belein
 
Upcoming Fistula Surgery, Stage 2, Need Help Please!






Hi All,

I am a new member and I need some help please.

My doctor thinks I have Chrons and I am scheduled for both a colonoscopy and a barium swallow/enema (not sure which one of those) within the next month.

I just had surgery under general anesthesia 16 days ago to place a loose draining seton for a fistula, and also to treat 2 fissures (one of which is very deep and chronic).

Depending on the test results, sometime in mid May, I will either receive proof that I have Chrons and start the various "Chrons medications" and have the doctor remove the loose seton, OR if the test results do not show Chrons the doctor said I would then need to have an endorectal flap surgery to "terminate" or permanently close the inside "door" of the fistula.

The doctor spoke briefly of some other more traditional surgical options, and she ruled both of them out- the first is the surgery where they cut the sphincter muscle for Stage 2 fistula surgery(forget the name of that one). She feels the risks of incontinence in female patients is too high for that surgery, ( I already have a loose seton in place now for my complex fistula) nor does she like the results of the fibrine (spelling) glue option which is injected into the fistula because it tends to come out soon after the procedure.

Of course I am concerned about the tests and the results, but I am much more concerned about the invasive nature of the "endorectal flap" surgery, due to long periods of post surgical pain and long recovery.

The surgery is tentatively scheduled for the end of May pending the outcome of the tests.

On a related note, I was also diagnosed with Celiac in 2002, Silent GERD (chronic cough which I have had for 2+ years is my only symptom) in 2007, and "intestinal" endometriosis in 2005. I have been to about 15 doctors just in the past 2 years to diagnose some of the above conditions.

Before I was referred to my current colorectal surgeon in mid February 08 , I was referred to 2 different OBGYNs who could not for the life of them figure out what I had, from November 2007 to January 2008. Instead of referring me to a colorectal surgeon right away, (keeping in mind that at the time I had NO idea that what I was dealing with was an abcess because the doctors kept telling me they had "no idea" what it was), these OBGYNS then tried to "remove" the abcess via local surgery 2 times, with no success, of course, because they were dealing with an abcess that kept coming back. To make matters worse, after the surgeries, the abcess was driven "underground" and developed into a complex fistula.

I have read online about an alternative fistula closing surgery called "collagen plug" or "Anal Fistula Plug" trademarked by Cook Medical.

I have not found any posts from any members who have had either the "flap" surgery or the "collagen plug" surgery.

If anyone has had either of these surgeries or knows someone who has, or has some more information, I would REALLY appreciate it!

Can someone also please tell me which test the doctor likely is referring to when she says she wants to see my small intestine?- the barium swallow or the barium enema contrast X Ray?

Thanks in advance for your help!
03-24-2008, 09:02 AM   #2
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
Hey Belein... Apologies to mis-spelling your name the last time. you don't say in your post where you are from. If situated in north america, try the CCFA website for info on these. I don't know if any of our current, active members can provide first hand info on these varrious procedures, but I suspect someone at CCFA can, or at least possibly provide info on a support group in your local area. As for the tests for the view of the small intestine, wouldn't it be best to ask your dr directly? Never be afraid, embarrassed, whatever.. to ask your doctor questions.. Write them down before a visit, and if any occur to you after a visit, note them and take them with you next time. answering your concerns/questions is part of her job... as it is part of your job/duty to ask, OK?

all the best...
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
03-24-2008, 03:19 PM   #3
JUNE
New Member
 
Join Date: Dec 2006
If you do have crohns, the flap surgery would be hard for u to heel. Also the Plug falls out so u have 50 50 chance of that working. I have a great surgen that explained all opitons to me. I have the seton now and have no trouble with it. If your gona pick between the flap or plug I would try the flap first. But if the flap is gona cut into the muscle u will have problems using the bathroom on yourself so that is something to to think about. The muscle holds stuff in. If its cut it will be loose and can't hold stuff in.
With the seton I just fold a square of toilet paper and put it between the cheeks to catch drainage.

good luck with your decisions.
03-24-2008, 10:49 PM   #4
My Butt Hurts
Squeals-a-lot!
 
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Join Date: Aug 2007
I don't kow if this will help you, but I had perianal fistula surgery 7 months ago.
You can find my post about it titled "I had fistula surgery" if you click on my name, and click on 'find more posts by My Butt Hurts'.
In short, I had the one where they cut right through your a-hole. I'm not having any incontinece issues. The surgery itself was pretty awful, but I didn't have much of a choice because I was in so much pain. In the end I guess it was worth it.
03-25-2008, 04:35 PM   #5
TheyCallMeRC
Senior Member
 
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Join Date: Jan 2008
Location: Auburn, Georgia
I am having another surgery tommorrow, will be my third in 7 months. I am so thankful that I have stayed with the drains due to the fact that they would probably not close anyway, but also the constant recurring abscess can drain. If I had them to partially close, then I would have had to already have more surgeries. Listen, I know it is a pain in the butt ( no pun intendid, or is it.. HeeHee ) but if you can get used to the drains ( I have, I am a male and I have just had to learn to wear maxi pads every day ) then I would suggest that. All I can do is suggest, you have to do what you feel what is best for you, but I can just say that the drain setons are not too bad once you get used to them and may be best for recurring abscesses. Oh, and if you do have Crohns, then chances are high that you will get more.
03-25-2008, 10:20 PM   #6
Belein
 
Thank you for all the replies!

Kev, my doctor usually takes several days to return calls and to answer my questions, (I guess she is swamped) but which type of barium X Ray she wants was one of about 7 questions..she is out of town for a week right now anyway.

I have the draining seton in place now, and I agree with all of your above descriptions, and how to best deal with the discomfort.

Naturally if I have Chrons, the doctor will want to leave the draining seton in place for as long as possible to clear lingering infection or recurrent abscesses...

Did any of you guys actually HAVE the COLLAGEN plug fistula surgery? Or know someone who did?

It was just FDA approved in 2006 as an alternative to the flap surgery, and it is installed with sutures from what I read so it does not seem that it would come out as easily as the older plugs that I think you guys might be referring to?..The outcomes are supposed to both be about 85% chance of success ie: no recurrence.

I would LOVE if the draining fistula could be kept in place for as long as is possible, and the fistula would close by itself WITHOUT any second surgery, but I think the chances of that happening are very very slim, since the fistula is complex.

My surgeon has already told me she will NOT do a traditional muscle cutting "laying open" of the fistula because of the concern of the fistula, she does not ever do that surgery for any of her female patients.

I am not clear why my doctor discussed the flap surgery with me as being the only option, and did not mention the collagen plug-( AFP by Cook Medical)??

I am working on getting some second opinions and in the meantime will not know my test results anyway until sometime around mid May because I will not be healed and healthy enough from the surgery to have either test until May, (still have pain and bleeding from where the doctor operated on the 2 fissures)

I have searched CCFA, but I am looking specifically to get feedback from someone who ACTUALLY had the collagen plug surgery and also someone who had the flap surgery, because it is my understanding that the flap surgery is the most invasive option of all for fistula repair, and will require recovery times and pain far beyond my first surgery...

Any ideas on where to get more patient feedback about BOTH surgeries?

Thanks!
03-25-2008, 10:23 PM   #7
Belein
 
r_cronier

How was your fistula surgery? I hope you are not in tremendous amounts of pain and discomfort but if you are, I hope you have decent pain killers that do not burden you with bad side effects to top it off...

I will be thinking about you, and hope you heal as quickly as possible!
04-03-2008, 02:53 PM   #8
Juls
New Member
 
Join Date: Apr 2008
Hi Belein. My first symptom of crohns was an anal fistula way back in 2000. I had 2 fistulas which they left the seton in for and it ended up healing on it's own. the setons were in for probably 6 months or so before they fell out on their own. then the fistulas drained for a bit longer if I can remember correctly - but within a year I was back to normal and have not had any problems with fistulas ever since. So there is hope!
10-22-2012, 08:05 PM   #9
seton
 
Join Date: Oct 2012
Location: paducah, Kentucky
Hi Belein. My first symptom of crohns was an anal fistula way back in 2000. I had 2 fistulas which they left the seton in for and it ended up healing on it's own. the setons were in for probably 6 months or so before they fell out on their own. then the fistulas drained for a bit longer if I can remember correctly - but within a year I was back to normal and have not had any problems with fistulas ever since. So there is hope!
i just had my seton break i am afraid to pull it out. what do you think i should do?
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