If anyone could offer me some advice I would greatly appreciate it. I have had my j-pouch for 15 years without any problem. Last summer I was diagnosed with an anal fistula from a breech in my pouch. A couple months later I found out that the fistula tract went to my vagina as well. I went for several opinions. My surgeon here in Maryland, as well as Cleveland Clinic and Hopkins all told me to live with the seton as long as I am symptom free. Although there is no definitive test to rule out Crohn's all of my doctors have said I do not have Crohn's. A few months ago my seton fell out and my surgeon thought I was doing well and decided to leave it out. Unfortunately I ended up with a vaginal abscess and so my doctor decided to put the seton back in today. During the surgery, however, he found that the fistula tract to my anus is completely healed and gone. While that's great, that unfortunately leaves me with a seton that goes from my vagina to my anus. It is sooooo uncomfortable and will also keep me from having intercourse. I was told that the next best options were the gracillus muscle flap repair or pull-down pouch advancement. I'm nervous about the success of these options though and I don't want to go back to an ileostomy. Any help?
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Hi Goldie - welcome! I'm sorry to hear about your fistula situation - my heart goes out to you.
I am much in the same position as you are. Had my pouch about 18 years when I developed an abscess just outside the v. which led to the discovery of a pouch-vaginal fistula. The v. side of the fistula is just outside of the v. opening.
I went to Cleveland (Dr. Hull) who told me this fistula would not heal (she 100% guaranteed it), so she put in a seton about 2 months, ago, and told me my options were 1) pouch redo (not interested); 2) pouch removal (maybe, but not now); and 3) leave the seton in for 3-4 years, take it out, and see what happens, which I'm not happy about, but is the course I'm currently on. Crohn's is a possibility, but it really doesn't appear that I have it, and a pouch redo wouldn't be possible with Crohn's. The seton does, at this time, keep me from marital relations as well, although Hull said I can go ahead with it - ha! Easy for her to say! She did stress that i/c won't harm the fistula/seton.
She told me the flap repair had a 10% chance of working (at least on my fistula)and that she rarely does them anymore. The plug she said has a closer to 0% chance of success. She seemed to favor the pouch redo (advancement, in your case?) All that being said, there are women on here who have tried the flap, the LIFT, gracilis flap, mesh (GinLyn), and other procedures, and have had mixed success. You can click on the "Find" button on the top of the page, and search for these various terms for some great information on these procedures.
I understand your nervousness about choosing an option - fistulas are very tricky and are not easy to get rid of. In my case, having the seton in gives me some peace of mind that the fistula has less chance of branching, abscessing, and causing other problems while I try to do research and consider the options.
This may not give you any guidance, but I wanted to let you know that you have quite a bit of company here, and that hopefully some of the others who have had the procedures can let you know more about their success.
Feel free to PM me if you'd like -
Best wishes.
I am much in the same position as you are. Had my pouch about 18 years when I developed an abscess just outside the v. which led to the discovery of a pouch-vaginal fistula. The v. side of the fistula is just outside of the v. opening.
I went to Cleveland (Dr. Hull) who told me this fistula would not heal (she 100% guaranteed it), so she put in a seton about 2 months, ago, and told me my options were 1) pouch redo (not interested); 2) pouch removal (maybe, but not now); and 3) leave the seton in for 3-4 years, take it out, and see what happens, which I'm not happy about, but is the course I'm currently on. Crohn's is a possibility, but it really doesn't appear that I have it, and a pouch redo wouldn't be possible with Crohn's. The seton does, at this time, keep me from marital relations as well, although Hull said I can go ahead with it - ha! Easy for her to say! She did stress that i/c won't harm the fistula/seton.
She told me the flap repair had a 10% chance of working (at least on my fistula)and that she rarely does them anymore. The plug she said has a closer to 0% chance of success. She seemed to favor the pouch redo (advancement, in your case?) All that being said, there are women on here who have tried the flap, the LIFT, gracilis flap, mesh (GinLyn), and other procedures, and have had mixed success. You can click on the "Find" button on the top of the page, and search for these various terms for some great information on these procedures.
I understand your nervousness about choosing an option - fistulas are very tricky and are not easy to get rid of. In my case, having the seton in gives me some peace of mind that the fistula has less chance of branching, abscessing, and causing other problems while I try to do research and consider the options.
This may not give you any guidance, but I wanted to let you know that you have quite a bit of company here, and that hopefully some of the others who have had the procedures can let you know more about their success.
Feel free to PM me if you'd like -
Best wishes.
OK...maybe I'm wrong...but I always thought the presence of a fistula (recto/vag) was a sure sign of Crohns...UC only effects the first layer of the colon...but Crohns can burrow through all the layers...and go through other organs...when I developed my RV fistula my diagnosis changed from UC to Crohns. Although there were other signs, like I never got better after the j-pouch surgery. I could very well be wrong....
Can you explain the seton? Is this used for a fistula that is with the pouch and the top of the vagina? I'm not sure I understand how the seton works. I would just like to have the fistula closed up without this drain (if that's what the seton is). I also do not want to go back to an ileostomy or chance the risk of losing the pouch. Thanks
In my experience, I was told my RV fistula was caused by an abscess/infection in a rectal gland, and that it had nothing to do with my pouch. My pouch has always functioned beautifully (for 10 years), no issues, not even pouchitis, until this. I have to admit, I was very worried it was Crohn's, as the infection had me in the bathroom so much and I felt so lousy (just like with UC). As soon as the infection cleared, I was much better. I have since had my fistula repaired, and so far, so good.
Fistula's are most common in people who have IBDs, but the other most common cause is childbirth. It is not unheard of in the "general" population.
As for the seton, akteacher, it is considered a drain, and keeps the track open to prevent it from becoming infected. In terms of a rectal/vaginal fistula, think of it in terms of a rubber band. It loops through the fistula track (or hole), and then snakes down the vagina, and back up through the rectal side, and tied off. Some people have no issues with them and don't even feel it. I, personally was very uncomfortable and irritated by it. . .
Best of luck ladies.
Colleen
Fistula's are most common in people who have IBDs, but the other most common cause is childbirth. It is not unheard of in the "general" population.
As for the seton, akteacher, it is considered a drain, and keeps the track open to prevent it from becoming infected. In terms of a rectal/vaginal fistula, think of it in terms of a rubber band. It loops through the fistula track (or hole), and then snakes down the vagina, and back up through the rectal side, and tied off. Some people have no issues with them and don't even feel it. I, personally was very uncomfortable and irritated by it. . .
Best of luck ladies.
Colleen
Hope you don't mind me joining in. I too, have a similar fistula. I don't think I'd consider the seton, as it does not sound comfortable at all. However, I am trying fasting with clear liquids so that the pouch can have a rest. I tried this before (for 20 days) and it healed all by itself. This time I am also trying using baking soda/water (as a douche) to neutralize the acidic drainage that is coming out of the vagina. This is not a fun thing to have. No intercourse either. This sucks but I'm determined to have this heal up by itself as it did before. Funny, this time, I did not have an abcess first. Any comments or suggestions to help all of us is appreciated. I've had my pouch since 1986 because of colitis.
I too would like to know how to repair it medically. I have an r/v fistula caused by the surgeon who created my jpouch. I have since had over 40 surgeries to try and repair, but nothing has worked. I had surgery to use my omentun, rectus abdominal muscle, a complete redo, alloederm, the muscles in my vagina moved. And various tweak jobs. It's been 7 years and I am at my wits end. I lived with a seton for a year and no help. I don't have chrons and now they are trying to heal it medically. I don't know what to do. I am miserable. I can't have takedown until it's healed.
Fistulas are sooooo hard to get rid of and sooooo annoying; I'm sorry you are dealing with one. Do investigate all options. I've recently discovered the "UpToDate" medical care summary through the Mayo Clinic (www.uptodate.com) and it has some great information. Technical, but in-depth.
I've had 3 porcine mesh repairs with multi-layer closures and this last time a "plasma plug". Unfortunately this has not worked for me, BUT I am apparently the only one of the original 10 women this particular technique was tried on who has not had success. The success rates are currently running in the 80-90% range, which is quite high. Just my luck, huh?
All that to say: do your homework, ask LOTS of questions, investigate everything. Make the decision that is best for you... And know you are not alone!
Gin
I've had 3 porcine mesh repairs with multi-layer closures and this last time a "plasma plug". Unfortunately this has not worked for me, BUT I am apparently the only one of the original 10 women this particular technique was tried on who has not had success. The success rates are currently running in the 80-90% range, which is quite high. Just my luck, huh?
All that to say: do your homework, ask LOTS of questions, investigate everything. Make the decision that is best for you... And know you are not alone!
Gin
GinLyn-I have done my homework and read anything and everything there is about fistulas. My surgeons are the top surgeons in the United States and World. I even told them about your story and had them call your surgeons in The Netherlands. At this point I am more knowledgeable than most. My surgeon told me I can do a lecture about this surgery.
I have had a fistula for a year. I went to my surgeon in Atlanta Friday after seeing several Drs local that were clueless. He put a seton in and told me to go to Dr David Beck in New Orleans and he will do a martius flap, the mesh does not work. Not many docs do Martius, Dr Hull at CCF Ohio and Dr Remzi there both do but with ostomy which I will not be required to do.
Hi
Ive had a recto-vaginal/ perineal fistula for 3 years since I had my j pouch removed, my then surgeon mentioned once he wondered if it had been caused during the surgery , after 10+ surgeries to try and close things , even a wound vac drain, nothing worked I was referred to a plastic surgeon who wasto work along side a colorectal surgeon. My first surgery with the two surgeons (both new surgeons to me) The colorectal guys just took the tract out and closed the deficit, I knew instantly that it hadn't worked , things were complicated by an abscess in my pre sacral area, which the colo rectal surgeon didnt deal with so of course 4 weeks later I was back in hospital for the procedure the plastic surgeons had planned to do in the first place 'lotus petal flap repair' I was still having problems after that so a few months later the did an eua and mri found the abscess had grown and was 15cm x 22cm, the pain was awful and the discharge vaginally , April 30th I had my 2nd lotus petal flap repair, my surgeons said they were more agressive this time, as they wanted to make sure they got everything all the abscess and the fistula tract, I am now nearly 7 weeks post op and have seen my surgeon regularly since, as I still have vaginal drainage and pain, I have an open wound in my right groin as the wound re opened which isnt unusual for me ! The last one in my left groin was alot smaller and took 5 months to heal so I;m not sure how long this one will take ! My surgeon is not sure what is causing the dischgarge and they keep swabbing it bit it always comes back clear . They have put me on a 2 week course of antibiotics I think as a precautionery measure as my gp put me on a course as the discharge had got thicker and more pus like! Now its just very watery, and I have been supplied with incontinence pads as its constantly draining. After seeing my surgeon on Monday he is now wondering if it is a seroma, I am awaiting an mri scan to see if it is and if so if it can be drained ! My original diagnosis was crohns but after colon removal they said more suggestive of Uc, but my new(ish) colorectal surgeon says he thinks my original dx was correct bit will not place me on meds or do tests as he said it would effect my healing from these big ops ! I suffer from lots of abdominal pain and pass blood from my stoma on ocassions, so i'm now on the colorectal guys waiting list but I'm going to ring them as things are getting worse ! In the past anything going on has always been put down to the fistula/ abscess etc. I have told the plastics I cannot go through that surgery again as this last one has by far been the worse of all my surgeries, I think if they find that the fistula is back then I may have to live with it as they have said there isnt anymore they can do ! I guess time will tell and my mri scan ! Anybody dealing with this totally has my sympathy ! Good luck to you all !!
Take care
Shelly xx
Ive had a recto-vaginal/ perineal fistula for 3 years since I had my j pouch removed, my then surgeon mentioned once he wondered if it had been caused during the surgery , after 10+ surgeries to try and close things , even a wound vac drain, nothing worked I was referred to a plastic surgeon who wasto work along side a colorectal surgeon. My first surgery with the two surgeons (both new surgeons to me) The colorectal guys just took the tract out and closed the deficit, I knew instantly that it hadn't worked , things were complicated by an abscess in my pre sacral area, which the colo rectal surgeon didnt deal with so of course 4 weeks later I was back in hospital for the procedure the plastic surgeons had planned to do in the first place 'lotus petal flap repair' I was still having problems after that so a few months later the did an eua and mri found the abscess had grown and was 15cm x 22cm, the pain was awful and the discharge vaginally , April 30th I had my 2nd lotus petal flap repair, my surgeons said they were more agressive this time, as they wanted to make sure they got everything all the abscess and the fistula tract, I am now nearly 7 weeks post op and have seen my surgeon regularly since, as I still have vaginal drainage and pain, I have an open wound in my right groin as the wound re opened which isnt unusual for me ! The last one in my left groin was alot smaller and took 5 months to heal so I;m not sure how long this one will take ! My surgeon is not sure what is causing the dischgarge and they keep swabbing it bit it always comes back clear . They have put me on a 2 week course of antibiotics I think as a precautionery measure as my gp put me on a course as the discharge had got thicker and more pus like! Now its just very watery, and I have been supplied with incontinence pads as its constantly draining. After seeing my surgeon on Monday he is now wondering if it is a seroma, I am awaiting an mri scan to see if it is and if so if it can be drained ! My original diagnosis was crohns but after colon removal they said more suggestive of Uc, but my new(ish) colorectal surgeon says he thinks my original dx was correct bit will not place me on meds or do tests as he said it would effect my healing from these big ops ! I suffer from lots of abdominal pain and pass blood from my stoma on ocassions, so i'm now on the colorectal guys waiting list but I'm going to ring them as things are getting worse ! In the past anything going on has always been put down to the fistula/ abscess etc. I have told the plastics I cannot go through that surgery again as this last one has by far been the worse of all my surgeries, I think if they find that the fistula is back then I may have to live with it as they have said there isnt anymore they can do ! I guess time will tell and my mri scan ! Anybody dealing with this totally has my sympathy ! Good luck to you all !!
Take care
Shelly xx
I am in New Orleans and Dr Beck has changed his plan to be flap advancement not martius flap
I am not thrilled as this is why I traveled so far at great expense and hassle
now i either say do not do this just take out the seton or take a chance
success rate supposedly not as good as that of martius flap
I will never agree with surgeons choices when they have no clue what we go through
after reading poor Shelly's dilemma it seems removing the pouch is not the answer either
so disgusted
the disease that keeps giving
by the way by no means does this mean anyone has crohns
I certainly do not
no rhyme or reason why fistulas appear
they are not exclusive to colonless people
women who undergo radiation get them from the radiation
another medical nightmare to go through that causes more problems like chemo
all guinea pigs in the scheme of things
will update you after the surgery tomorrow
I have no clue how long it takes to know if this is a success
I am not thrilled as this is why I traveled so far at great expense and hassle
now i either say do not do this just take out the seton or take a chance
success rate supposedly not as good as that of martius flap
I will never agree with surgeons choices when they have no clue what we go through
after reading poor Shelly's dilemma it seems removing the pouch is not the answer either
so disgusted
the disease that keeps giving
by the way by no means does this mean anyone has crohns
I certainly do not
no rhyme or reason why fistulas appear
they are not exclusive to colonless people
women who undergo radiation get them from the radiation
another medical nightmare to go through that causes more problems like chemo
all guinea pigs in the scheme of things
will update you after the surgery tomorrow
I have no clue how long it takes to know if this is a success
About 2 months after my first takedown, I developed symptoms of an RV fistula. After three exams revealed nothing, my surgeon did an exam under anesthesia and found it, along with another fistula that was next to my anus and needed a seton placed in it. I was temporarily diverted to a loop ileo again and started six months of Remicade treatments (I had originally been diagnosed with UC, but they thought at this point that it was Crohn's). After the Remicade treatments, most of it had healed up, but I did need a small surgical repair using the gracilis muscle to completely heal it. I am happy to say that it worked for me; I had my second takedown about three months after the repair and have been on Humira for maintenance ever since with no fistula recurrence. The seton was very painful given where it was located, and for months sitz baths were my only comfort. Throughout all that drama, I did have to abstain from sex for a little over a year, which wasn't hard considering I didn't want anyone touching me with a 10 foot pole at that point. So sorry you're going through this, but I hope the surgical repair is successful for you if that's the route you choose to go with.
Hi everybody,
I just, on Friday, had a synthetic plug put in, to HOPEFULLY heal my pouch-vaginal fistula. The idea is that my body would dissolve the plug, and send "healing" cells to the area to fill in the tract. Pretty sure I saw the plug come out yesterday- pretty bummed. I do have Crohn's and was given a 20-30% chance of this working...but I am more dissapointed than I thought I would be. I was given activity restrictions which I followed, but am wondering if I had taken it even easier if it would have worked...There are other more invasive options which have a 50-60% chance of working, but, if they fail..then the fistula is bigger. It's just emotionally hard to deal with feeling like my body is a bit broken, not working how it is supposed to, and feeling kinda gross, since I have symptoms daily. Does anyone have tips for managing the symptoms? Sorry for my rant- just so nice that this group exists...and I totally understand what some of you are going through!
I just, on Friday, had a synthetic plug put in, to HOPEFULLY heal my pouch-vaginal fistula. The idea is that my body would dissolve the plug, and send "healing" cells to the area to fill in the tract. Pretty sure I saw the plug come out yesterday- pretty bummed. I do have Crohn's and was given a 20-30% chance of this working...but I am more dissapointed than I thought I would be. I was given activity restrictions which I followed, but am wondering if I had taken it even easier if it would have worked...There are other more invasive options which have a 50-60% chance of working, but, if they fail..then the fistula is bigger. It's just emotionally hard to deal with feeling like my body is a bit broken, not working how it is supposed to, and feeling kinda gross, since I have symptoms daily. Does anyone have tips for managing the symptoms? Sorry for my rant- just so nice that this group exists...and I totally understand what some of you are going through!
My surgeon won't even bother with plugs, as they have a high fail rate.
My GI said he has a colleague doing clinical trials with plugs coated in stem cells, which are showing more promising results. Fingers crossed!
My GI said he has a colleague doing clinical trials with plugs coated in stem cells, which are showing more promising results. Fingers crossed!
Woodstock69 I have an appt. to see Dr. Beck for a second opinion next month then am scheduled for follow up at cc a week later for an RV fistula and jpouch redo or repair. I have a temp (hopefully) ileo since April. How are you doing since your last repair attempt?