Hi guys,

I'm new to the site and am glad I to have found somewhere where people experiencing similar problems to mine have a forum to discuss things. Just reading some of the other postings has allowed me to mentally deal with my condition much more easily.

Here's my situation. I was diagnosed with an anal fistula last year, and in May 2006 had an anal fistulotomy with seton placement. Since then, I have had alternating periods of almost no blood and discharge alternating with periods of moderate blood flow and discharge, with appropriate pain. Is this normal?

The latest episode has driven me to schedule surgical placement of the Cook anal fistula plug four weeks from now. I'm hoping that anyone in a similar situation can advise me whether this is the best option at this point (as my doctor recommends) as well as giving me a realistic idea of pain, success probability, and most importantly the recovery time. How long were you completely off your feet? How long until you can exercise and come close to a full recovery with no risk of injuring the repaired area? Any tips on how to maximize my chances of a successful surgery and recovery?

Any and all information is greatly appreciated as well as any words of encouragement. I'm a 28 year old male, is this "normal" for someone this young?

Thanks for your help and Happy New Year!

Hi,
Welcome to the site. Sorry its a fistula that brought you here
Several of us women have had the AF Plug for recto-vaginal fistulas

Here's a link to our most recent discussion about it:
http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/7491033091

This is a very SMALL procedure compared with pretty much any other fistula repair as usually there is no cutting involved just placement and suturing of the plug. Pain in minimal. YOu should however be prepared to pretty much do NOTHING for 2 weeks after surgery as the biggest reason these fail in perianal fistulas is the plug coming out. Take it really really easy.

If you're interested I have a link to a lecture given at American Society of Colon and Rectum surgeons by the people who make it. In it the lecture cannot stress enough how much patient compliance to minimal activity is of paramount importance. Also, if you haven't visited Surgis's website about the plug I recommend that as well.
http://www.blueskybroadcast.com/Client/ASCRS/#10
Down at the bottom in the Anorectal section.

Wish you the best of luck!

--
katie

Thanks Kay

I plan on watching the video when I get home tonight. The research I did on the plug showed about an 83% success rate, yet my doctor told me he's only had about 30% success. Do you think I should try to find another surgeon or get a second opinion? He's a good, competent, and caring doctor and has been well spoken of in posts on this site. I'm not dying to getpoked and prodded by another doc unless it's vedry important. Thanks for your kind word and advice. Hope to hear from you soon...

Hi

Well let me start off by saying that I think statistics can be misleading. The reason Surgis's sucess rate is so high is that they used a very select group of patients (this is a fact that they do not try and hide to their credit) Their qualifications for who they used in their study was very specific and they admit in various types of fistulas the success rate is not as high. 30% success isn't great but how many different types of fistuals has he tried it on? Because that will make a difference! I was the "guinea pig" (1st time plug procedure)for my surgeon the very skilled Dr Remzi at the Cleveland Clinic and it didn't work for me but its not surprising because it rarely works for r-v fistulas and I have crohns which makes it even less likey to work. Technically unless my surgeon's tried it on someone else he's got a 0% success rate Poor guy! Bad stats for an excellent surgeon because of a rotten patient He did it FOR ME though because the procedure is very low risk, very low complications, pain etc. And I'm desperate for fistula repair. Basically he cares more for my comfort and hope than his stats.
Its also a very technically easy procedure for the surgeon. When I went for my pre-op I asked dear Dr Remzi if he ever did it before and his response was "No, but, its not rocket science"

If you like your surgeon and you feel comfortable with him and he's got a good reputation I don't think its necessary to get someone else to do the plug. Thats just my 2 cents.
(Oh, btw, I'm 28 too!)

Good luck

--
katie

Katie
Thanks so much for the support and advice. Any idea why yours failed? How vigilant were you about ataying off your feet? how can I maximize my chance at success? Since yours failed, did it pop out, was it painful, how did you know it failed? I'm getting a little tired of dealing with this... I guess that's normal. What's the next step for you after the plug? At what point do you just live with a draining fistula? My doctor told me that after the plug is the intestinal covering of the fistula but he said I may lose some control of my bowels! At 28! How do you deal with all this? Thanks in advance...

Sam

Hi Sam,
I totally understand where you're at. I had my colon out at 13, had a happy and functioning j-pouch for 14 years. Last year I was diagnosed with crohns diease with a recto-vaginal fistua. I've had 2 repairs with no sucess. Last time I saw my surgeon he said that I need to come to terms with the fact that I'll probably have to have an ileostomy for the rest of my life. At 28. I haven't been "normal" for as long as I can remember, now how am I supposed to deal with that? Anyways - thats my rant for today.

To answer your question. The plug failed for me for several reasons #1 (in no particular order) I have crohns disease - which makes any kind of healing of tissue not very likely #2 I have a recto-vaginal or pouch vaginal fistula which is one of the worse kind of fistulas as far as successful closure goes. The STATS are only about 50% closure after multiple repairs and thats for women who don't have crohn's disease. For Crohn's its something like 30% at 20 months which doesn't mean that it does not reoccure eventually. #3 my fistula has an extremely short tract. My surgeon did lengthen the fistula tract - giving it an extra branch if you will to try and help the success of the plug but that didn't help.
Really both of us went into it knowing the chance that it would work for ME was around 30% but because the risks are minimal it was worth a shot.

I was extremely vigilant out taking it easy. I wasn't tol to stay of my feet just be REALLY REALLY slow and I was told to avoid getting in and out of cars another girl on this site who had the plug the same day as me was told to avoid going up and down stairs (we compared notes!) and no sex. So, obviously I did have to ride in cars during the first two weeks but I didn't drive and I got in like I was a great grandma - not because of pain but just trying to be careful. I did go up and down stairs but tried to avoid it and did that like I was 90 as well. I spent a lot of time lounging and shuffling around. Basically I tried to turn myself into an old women. It was EXTREMELY difficult because I felt great and I wanted to be doing stuff!

Well after my post-op visit my surgeon wanted to do an EUA to see about the plug. I was pretty sure it didn't work because I was still having draining though. EAU confirmed that the plug was gone. Did it dissolve? did it fall out? No clue I never saw it. My other fistula friend saw hers come out in the shower Didn't hurt though.

Unless you see it come out it really just takes time to know if it worked or not because the plug is made out of biomaterial and its supposed to bond with the body's cells, thats why it takes time to know if it really worked or not. All that tissue growth! Another girl on this site who had the plug the same day as me (all our names start with K too - Twilight zone!) just had an EUA by her surgeon on Thursday(we all had the plugs done back in AUGUST) He told her that the fistula is CLOSED!! Success

It sounds like the other procedure your surgeon is discussing is a flap repair. My first repair was a flap - thats pretty painful. Any time they cut into the spincters there is a risk of incontinence. If your first repair was a fistulotomy then there was risk of incontinence for that procedure as well. And I'm sure you know all about the pain factor

I have a bunch of fistula resources if you're interested. I've had my fistula about 2 1/2 years now so I've done my homework.
Article:
http://www.fascrs.org/displaycommon.cfm?an=1&subarticlenbr=237
More video lectures about fistulas (each about 10-15 minutes long - under Anal Disease
http://www.vioworks.com/clients/ascrs2005/presentations.asp#link_1579

http://www.vioworks.com/clients/291/

Heh, if you watch all these you'll know all you EVER wanted to know about fistulas! But knowledge is powerful. My doc said the only reason he keeps trying to repair this fistula is because I'm smart and motivated.

What kind of fistula do you have?

--
katie

This message has been edited. Last edited by: kaydbird,

Good morning Katie,

Once more I really want to thank you for your speedy correspondence and sage advice. I'm a pretty open person in general about things, but for us 28 year olds it seems like something that I just don't feel comfortable talking about with my group of friends; I'm sure it has something to do with buttholes and being embarrassed. Thankfully I've been able to communicate openly with my girlfriend who has been amazing in support of me as well as my parents who are also amazing. You are a welcome addition to my small support circle, the common ground and relative anonymity make things easy for me.

My plan post-surgery is to basically do nothing. I've come to grips with the fact that I probably will not be leaving my apartment for at least two weeks although I am willing to go longer if necessary. I'm willing to do pretty much anything to make this work. As far as pain goes, I'm not that concerned about it. It seems that thinking about it before hand makes it seem pretty bad, but then you realize that you've been living a relatively normal life with it (for months in my case), except for the discharge and other grossness.

I'm not sure exactly what type of fistula it is. It runs from my colon to the side of the perenium and when my doctor did the first surgery he placed a seton. Beforehand he told me he may be able to "lay it open" if it was shallow enough btu that it was too deep to do that, hence the seton. That means it's probably a bit longer than some which sounds like a positive when it comes to plug placement.

I'm resolved to continue to work to resolve this issue as best I can and despite the occasional feelings of depression or just being tired of dealing with this, I'm still in good spirits. The hard times for me come when this affects my social life (snowboarding, working out, going out to bars where I wouldn't want to sit on the toilet), sex life, or when I get that sweet irritation of the skin in that area! Other than that, I'm good.

For the newcomer like me, perhaps you could define the term "EUA". Is there somewhere I could learn some of the terms thrown around here or will I just pick them up as I go? Again, thank you. I find myself checking for replies on here more than I ever thought I would. Seems like we've become pen pals of a sort.

Enjoy your weekend...

Sam

Hi Sam

I actually assumed that you had a j-pouch but I just took a look at your profile and you don't mention any type of IBD or surgery other than the seton so I'm not surpised you don't know a lot of the terms! I don't know anything about heart surgery, but then, I don't have heart disease. I'm actually suprised you made it to this site considering that though. Perhaps a google search of fistula? I'm happy I can help you.

No, talking with friends about rectal disease is not really something I do either! People can generally tolerate discussions about acid reflux or heartburn but draw the line at intestinal and rectal disorders. Thankfully this is a place where we discuss all these things in great detail pretty much non-stop. Its kind of a haven. I've gotten a tremendous amount of help and support here - especially from my other fistulas buddies.

EUA - Exam Under Anesthesia. Basically in order for the surgeon to get a good enough look at the fistula it would be very painful for me, so I'm given a general anesthetic (completely out) and the Doc can then poke and prod, dialate, whatever all he wants and I just have a nap. As for the other terms, I'll do my best to define anything you're having trouble with, but my best guess is that they don't apply to you - which is a good thing!

So it sounds like you had a seton but NOT a fistulotomy (that is what he means by "lay open") bascially he would have opened up the tract and then let it heal in on itself. A longer tract does mean that the plug has a better chance of working.

I understand completely about the depressing feelings and the fistula dictating what you will or will not do or where you will go. It stinks.
Do you have a lot of drainage? What do you do about it? As for the irritation you can try good old vaseline (cheap and reasonably effective) or there is a lotion called Calmoseptine (link on this home page) I think its more expensive but it also has aneglesic I think). I always just used vaseline and that worked ok for me.

If you decide to go ahead with the plug I say Netflix it up, hit the library, and stock up the fridge before the procedure then try and do your best to enjoy your "vacation"

Hope you have a nice weekend too!

---
katie

Katie

You're right in your guess that I don't have a J-pouch. The fistula and seton placement were my first forays into the wonderful world of rectal medicine. As far as my fistula, I seem to have periods when there's very little drainage alternating with periods with significant (at least by my standards) drainage and sometimes bright red blood. I know it's coming from the fistula (as opposed to my rectum) because when I put a pad in my underwear, the drainage is off to the side. All I've done so far is use pads occasionally and shower two to three times a day using warm water to clean the area. I'm not sure if this is bad for it, but sometimes it just feels yucky and so much better after it's been cleaned. I'm going to see the Doc on Tuesday for a pre-op appointment, so I'll keep you posted on what he has to say. After reading a lot of the posts on this site, it seems my problem is pretty minimal compared to what other people have been dealing with, but since it's mine it feels like a big deal! Thanks for everything!

Sam

Good luck nesta4!

I had a perianal fistula (with a painful abcess) almost 2 years ago. Last year I developed another one on the other side. The surgeon opend mine up last fall and put in two setons. I have been healing since. It has been painful for a long time. I started talking with the doc about a plug also. I wish the statistics for success were better.

I have a low level of drainage constantly, sometimes blood but usually just ooze from the incision. I have a sitz bath that I use after I move my bowels to clean the area (it is hard to clean in the incision). If you can get a hold of a sitz bath it is way quicker than a shower and feels better. I usually have some pain after I move my bowels and the hot water really helps everthing to feel relaxed and better. I use a pad too which is a bit weird being a guy but it works. Let us all know if it works.

Hi guys,

Just wanted to update this since I underwent my Cook plug placement this morning here in San Francisco. Everything went great, and my surgeon told me it was the cleanest and most beautiful fistula repair he had ever seen (if you can call a fistula clean and beautiful!). I feel great and am excited to see how this progresses and praying that my body will accept the plug and my fistula nightmare will be gone forever, keeping the relatively low success rates in mind. In any case, my surgeon told me that even in cases where the plug "fails", patients often experience less symptoms than before the plug and are happy with the results. Only time will tell, I guess. I'll keep you updated!

Hey there!
I'm glad to see you posting back. I was wondering how you were doing. I'm very happy to hear how pleased your surgeon was with the procedure that is very good news. Now just TAKE IT EASY!!! And hopefully the plug will do its thing

Take care

--
katie

Nesta, I am in SF too with failed fistula operation. Who did your plug surgery??Someone at Cal Pacific or UCSF??Also, something I found out, see if your surgeon will recommend for you to visit a decompresion chamber. Usually, used for divers with the bends, its an oxygen rich environment which promotes quick healing. In some places they use it post fistula surgery to heal the surgery site and reduce potential tracking.

Panpan
Thanks for the advice re: hyperbaric treatment. I'll ask my doctor about it, although I seem to be healing up really well so far (knock on wood); minimal bleeding and pain, everything still feels like it's in the right place, etc. It's been five days and so far so good. I had my procedure done by Dr. Sternberg at CPMC. He's very competent and caring, and he's made me feel very comfortable as a patient which is difficult when you're dealing with that part of your body. Anyways, let me know if you seek further treatment for your condition, I'd like to know what you've done. If this doesn't work, I'll have to consider a fistulotomy but that potential loss of bowel control is terrifying to me. Anyways, I'll keep you all updated, thanks for all the support.

How's the fistula going? I had my repair done by Dr. Abel at CPMC in 2005. It was an advancement flap with fibrin glue and lasted exactly three months before coming undone.I wouldnt have one again as it was nasty surgery with untold problems caused later in the sex department.