Thank you!

I'm new to this site and was wondering if anyone had their fistula after having a J pouch. I'm 18 yrs post op and can't believe this is happening. Of course I've read so much and I'm absolutely freaked out. I have an MRI tomorrow & had a pouchoscopy & ultra sound last Thursday. The Dr. said it was better than he expected but won't discuss which procedure he wants to perform until the MRI results are in. I've been living with the fistula for 3 yrs now and in April it broke through the skin. I had one of my staples from the reconnection come thru...talk about weird. My Dr. mentioned fibrin glue & I believe the flap procedure. Does anyone have any recommendations on other procedures or advice? If anyone has experienced this w/a J pouch I would love to talk and have some guidance & support....thanks Susan

Well, I had my AFP put in on August 28 (three weeks ago), and I'm not sure that it worked. I've definitely seen a bit of the plug come out (along with a couple of the stitches used to tack the portion of the plug to the external opening), but it didn't look large enough to be the whole plug. I've also had a bit of drainage each day and some soreness in the area. The doctor thinks there may still be a chance that it has worked if the drainage eventually stops, but I'm not so optimistic. Can anyone out there tell me how best to tell if the procedure has worked? I expect that an EUA would be definitive, but any other sure signs of success or failure? The other thing that's driving me a bit crazy is some itchiness in the entire area...with all the poking and prodding and topical antibiotics (Flagyl), I'm sure the area is not happy, but I just want to make sure this does not indicate an infection of some kind (there is no redness in the area and just some occassional itching)...For anyone who experiences sharp pain after a bowel movement following AFP surgery, I recommend ice cubes...My AFP was accompanied by endorectal advancement flap surgery and this cause quite a bit of pain...the only thing that helped was immediate application of the ice cube to the area...yes, very funny to grab a tray of cubes while heading into the bathroom...thank God I live alone!

I had AFP done in April and it took 6 months to heal. The surgeon said it was a failure and I needed to have another surgery but I decided to wait because I just couldn't go through another one. Then when I gave up on any hope of it ever healing it healed!!! It healed after a course of cipro for a UTI. Don't give up hope it may take longer then expected. I too thought I saw some of the plug come out but I'm not sure if it did all I know is I'm healed for now!

Thank you TRH. I saw my doctor two days ago, and he also said it can take several months for a definitive answer on whether the AFP has actually work. As long as there is some kind of hope, I'm okay with the discomfort. Congratulations that yours worked!

I'm glad to hear your procedures worked....I had a seton drain put in Sept 4th and I'm due to have either AFP or fibrin glue in a few weeks. I've had a lot of problems with the seton drain and I don't think I can handle more problems with the plug. It took me 3 weeks to be able to sit & walk properly...still sore by the end of the day. I'm not prepared to have to wait 6 months to see if the plug works. My life has been on hold for months already and my children have suffered because I can't do certain activities with them...As you can see i'm not a happy camper. Please tell me what you can & cannot do after AFP...Can you go to the gym? sex? lift more than 5lbs? I feel like an old person...thanks Susan

Hi Susan,

I took about a week and a half off from work and worked remotely from home on my couch during that time. I live alone and was absolutley fine going up and down stairs by myself (slowly) and doing other normal activities at a much reduced pace. I did not, however, go to the gym or have sex for about three weeks. How your recovery goes really depends on the location of your fistula. If you have a recto-vaginal fistula, it will probably be much longer before sex is not uncomfortable. The only real pain that I had following the AFP surgery was after a bowel movement and, to be honest, it was pretty brutal. The only way that I could make the pain go away was to immediately apply an ice cube and just freeze the area. It was awkward, but was the only thing that worked. I'm about a month out and have no pain in the area at all (back to yoga three times a week)...just a feeling of pressure from time to time as there is still some drainage. Your situation may be different as I had no problems at all from the seton that they put in place before the AFP surgery. I actually forgot it was there. All of this being said, I won't really even know if my procedure worked for a few months...but I don't expect to put anything on hold during this time...Hopefully you have a doctor you can talk to. Mine has been great...totally open and honest and never dismisses my concerns...he e-mails me back within an hour or so if I have questions and has been available for multiple follow up visits.

Hey everybody. I'm new to this site. I had the Cook plug put in almost 6 weeks ago and I'm totally nervous about the results. My doctor told me that it should stop draining by the 6th week and if it doesn't, then it failed. However, as I was reading the postings, some docs have said it should take up to several months. so, what's the rule? I'm just completely frustrated with this whole process. I've had this problem since May and I'm just glad that there is this community out there. It can leave you feeling helpless, lonely, and depressed. I think if my doc tells me that the plug failed, I'm gonna take a break from all of these surgeries and broken promises and just wear dressing for a while. I feel like I've lost control over my life. I have postponed and stopped so many things because of this and I think I just need to step away from it for a while. Is this crazy? I just feel emotionally taxed.

My doctor said that it can take several months to determine the success of the AFP surgery. I've had a little bit of drainage every day since my procedure and am just crossing my fingers. Unless you are feeling pain, I'd think that getting back to "normal" life after six weeks should be do-able. I was able to go back to yoga and hanging out with friends after about four weeks and a pretty normal day-to-day life after about six weeks. I don't know if it helps, but I just try to tell myself that this is really annoying (rather than something more dramatic) and laugh about my little problem (I've given the fistual a pet name, so that I can speak in code with my friends)...they've been part of the process and it's made a world of difference to be able to laugh at "Mertha."

Had fistula plug surgery on November 6th and 4 days after surgery had some air pass through and now fecal matter is also passing through. I did not see the plug come out and the doctor thinks it is still there because the fistula tract was so large that the plug did not fill the hole but I am so concerned that it is not working. Do you think that it can work with all this fecal matter in the area? I also had a J pouch in 1987 at the Mayo Clinic and have had a fistula since 1991. I have been battling with this thing for, it seems, my whole life, I am so frustrated. Any answers?