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4th surgery for Anal fistula, may need 5th. help

I am so over these surgeries.  I just had my 4th surgery for a fistula and this one did not work. The Dr. did an extensive flap repair and stiched the flap over the tract. Went yesterday for follow up.  Infection settled in the flap area and he is talking about a seton placement. This surgery was one week ago. I am getting very depressed as he said the tract is way up in the rectum.  I have had the 4 surgeries in 4 months.  Can ANYONE help me with this or direct me to a web site for me to look at.
I don't want to spend the rest of my life dealing with this. Thank you
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Avatar universal
I've had to surgary first one anal abbest . Went good then a year later started hurting again . Went back and they said I had a anal fistula . Had to wait a hole year cuz I didn't have any money cuz I was layoff from work . Then I finally got some money had my second surgery . Now this is werid okay surgery went good went back and I though I was getting these two stictes out but there not stieses there wires comeing out of the fistula right bye the butthole . Dr said the fistula cut throw the mussal of my butt and the strings are tied to each of the mussal so he can put weights on them pulling on the mussal make them hit eachother so they can heal back together . When he tryied this the first time I cryer so bad I'm 27 Years old and cryed like a baby . He said next time he will numb it so it don't hurt but has anyone ever hurd of this I'm really scared his won't work
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A related discussion, anal fistula was started.
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A related discussion, peri anal;cyst was started.
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A related discussion, reccurring fistulas was started.
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A related discussion, secton was started.
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Well I had my surgery today hurt like he'll . He put to fishing weights on these strings coming out of me . Got to go back on Friday to have more put on
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A related discussion, Contemplating anal fistula surgery was started.
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A related discussion, Chronic Fistular was started.
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535457 tn?1213457436
A related discussion, can anyone help? was started.
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Avatar universal
Hi all - this is much much later (8-07) and I felt much relief hearing that I'm not the only one going through these things.  My question is:  has anyone been counselled to have surgery for placement of the Anal Fistual Plug (AFP)?  My surgeon has recommended this and has indicated that it is fairly new with little track record?
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Avatar universal
I have read this entire thread, i think, thank you. I have been going through nothing compared to all you. My aunt died last year after she battled severe Crohns for over twenty years. She led a full life, but the Crohns ate her GI up. She was born with two displaced hips and had to have them replaced in her twenties or early thirties. The Crohns is said by the family the reason for the hip replacements. She was one of the first women to give birth to twin,not identical,boys after having dual hip replacements. I am writing to encourage you to have the ostomies if all else has caused you to suffer. They are not as bad as they sound. She lived with it, raised 3 boys and was @ 57 when she finally died of colon or upper GI cancer,not sure. She had a lot of problems with her body, but they were due to smoking probly 2-3 packs cigs/squares a day! My grandfather died of all sorts of cancer and had made it to 73. He had liver and brain cancer for long time and kept it back from us. We did know he had skin cancer though, for over 30 years. He was a hunter, fisher, trapper, and loved to use his metal detector. BE ENCOURAGED! If you have had the operations,as some have, i see no end and feel SOOOO SOOORRRY:( for you. All I can say is that my aunt was always drinking cofee non stop and smoking, so this only made things worse. She could cook the daylights out of anyone. I mean ANYONE. She was pretty thin, never over 130 at 5' her life. She did die at a young age. I say 57 is young, I'm 27. I just want you to know she was alwqays involved in church up until she died. She was the head of the kitchen their. She would stroll all over town in her Amigo, hips remember, and people always liked her from what i can tell. She did live life to its fullest, even though she was hospitalized more and more. She gave 20 some years to her church ladies auxilary. Planning funerals while herself so close to death. She laughed all the time. Their is medical documentaion that says people who have chronic illness live better when they laugh a lot. Also, their is proof people who believ in Jesus as GOD don't die as easily as others who get ill. They also have a better healing ratio than atheists and other religions. This is from a Psychology Journal! Which can not explain the reason why.
Helpful - 0
Avatar universal
I have read this entire thread, i think, thank you. I have been going through nothing compared to all you. My aunt died last year after she battled severe Crohns for over twenty years. She led a full life, but the Crohns ate her GI up. She was born with two displaced hips and had to have them replaced in her twenties or early thirties. The Crohns is said by the family the reason for the hip replacements. She was one of the first women to give birth to twin,not identical,boys after having dual hip replacements. I am writing to encourage you to have the ostomies if all else has caused you to suffer. They are not as bad as they sound. She lived with it, raised 3 boys and was @ 57 when she finally died of colon or upper GI cancer,not sure. She had a lot of problems with her body, but they were due to smoking probly 2-3 packs cigs/squares a day! My grandfather died of all sorts of cancer and had made it to 73. He had liver and brain cancer for long time and kept it back from us. We did know he had skin cancer though, for over 30 years. He was a hunter, fisher, trapper, and loved to use his metal detector. BE ENCOURAGED! If you have had the operations,as some have, i see no end and feel SOOOO SOOORRRY:( for you. All I can say is that my aunt was always drinking cofee non stop and smoking, so this only made things worse. She could cook the daylights out of anyone. I mean ANYONE. She was pretty thin, never over 130 at 5' her life. She did die at a young age. I say 57 is young, I'm 27. I just want you to know she was alwqays involved in church up until she died. She was the head of the kitchen their. She would stroll all over town in her Amigo, hips remember, and people always liked her from what i can tell. She did live life to its fullest, even though she was hospitalized more and more. She gave 20 some years to her church ladies auxilary. Planning funerals while herself so close to death. She laughed all the time. Their is medical documentaion that says people who have chronic illness live better when they laugh a lot. Also, their is proof people who believ in Jesus as GOD don't die as easily as others who get ill. They also have a better healing ratio than atheists and other religions. This is from a Psychology Journal! Which can not explain the reason why.
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Avatar universal
Hey everyone Im 16 years old and had an anal abcess when I was 8 years old.  The problem was then eradicated until February of last year when I discovered another abcess in my anus. It was operated on and I then was diagnosed with a fistula. I have had three operations already on this problem and the third was only last week.  It is very painful and I can't go to school and am missing out on so many things its making me feel very down. I have a piece of string hanging from the wound which my surgeon has left open which is extremely painful. I'm terrified because he hasn't told me much about my condition and I'm scared I might have cancer of the rectum or a bowel disease! I feel embarrassed with this problem after a district nurse said that it was my fault I had this problem but after reading this message board I am more at ease. I sympathise with you all because this is such a painful condition to have and drains you of all energy.
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Avatar universal
Goodness what a relief to find you guys. I have had umpteen surgeries for anal and rectal abscesses (every 18 months for the last 16 years). I have also had various examinations under general anaesthetic for fistulas. Many different fistulas have been identified by different surgeons but none treated. I recently was diagnosed with a dermoid cyst (apparently formed before I was even born) that has apparently been causing all the trouble. Since having it removed a month ago the suture line has opened up and I am now having a 6 inch gauze packed into the growing wound daily. I also have wind and what looks like tiny pieces of faeces coming from the wound. Has anyone experienced this wind problem from an open wound? Surgeon suspects another fistula.

Apparently dermoid cysts are very rare and therefore extremely difficult to diagnose (I had previously had MRI scans and other investigations that had failed to pick up on this)so just wanted to point out that this could be a possible cause of recurrent peri-anal disease. Having said that I feel like I'm back at square one again, depressed, losing work and self-esteem, especially since this very slight facal leakage from the wound.

I can only say that my thoughts and best wishes go out to you all, I am so glad to have found a forum for venting the frustrations I'm sure you all feel from time to time and often more often than that.

I am waiting to see the surgeon next Monday but am frustrated that I am going to have to wait even longer for anything else to be done, it seems like a common experience here. Are there any answers?

Take care and I truly hope you find your ways out of this.
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Avatar universal
Goodness what a relief to find you guys. I have had umpteen surgeries for anal and rectal abscesses (every 18 months for the last 16 years). I have also had various examinations under general anaesthetic for fistulas. Many different fistulas have been identified by different surgeons but none treated. I recently was diagnosed with a dermoid cyst (apparently formed before I was even born) that has apparently been causing all the trouble. Since having it removed a month ago the suture line has opened up and I am now having a 6 inch gauze packed into the growing wound daily. I also have wind and what looks like tiny pieces of faeces coming from the wound. Has anyone experienced this wind problem from an open wound? Surgeon suspects another fistula.

Apparently dermoid cysts are very rare and therefore extremely difficult to diagnose (I had previously had MRI scans and other investigations that had failed to pick up on this)so just wanted to point out that this could be a possible cause of recurrent peri-anal disease. Having said that I feel like I'm back at square one again, depressed, losing work and self-esteem, especially since this very slight facal leakage from the wound.

I can only say that my thoughts and best wishes go out to you all, I am so glad to have found a forum for venting the frustrations I'm sure you all feel from time to time and often more often than that.

I am waiting to see the surgeon next Monday but am frustrated that I am going to have to wait even longer for anything else to be done, it seems like a common experience here. Are there any answers?

Take care and I truly hope you find your ways out of this.
Helpful - 0
Avatar universal
Well, individual stories help because we all have similar cases, but some more similar than others. So, brief Summary:
28 year old male, started 4 years ago. Started as Anal Fissure, which progressed into abcess. Abcess drained, until discovered that the problem was a fistula that led from the top of my sphincter muscle to the top of my but crack, right over tip of tailbone. When that was discovered, opted for advance flap.Din't work. This is over the course of 2 years, of having the insicions packed, abcesses lanced (developed 3 lumps over time)
It's been 2 years now since the last surgery. Everyday I live with a draining fistual. But, so far, as long as I don't drink too much coffee and I eat relatively healthy, and exercise, I've learned to live with this. Being a young male, it's exteremly embarrassing, and in fact, no one knows besides family. And even worse, I'm single. My last girlfriend became my nurse, which destroyed a 5 year relationship. But so far, so good. I'm dating, and having sex, and no one is the wiser. I have 2 giant scars on my ***, but I just say I broke my tailbone and the scars are the surgery for that. It's possible to live with this disgusting, embarrassing, and seemingly incurable condition. But you need to watch your diet and exercise--HUGE. I've noticed the draining increase when I don't do that. And take plenty of showers. . Surgery should be a last resort in replacement of diet and exercise, since surgeries don't really seem to help. It's almost like we need a further advancement in this field before I'll even consider going for another procedure. Anyhow, I'm here with the rest of you, and I'm without insurance, which makes this condition even scarier. Take care all, and spread the word on any advances in the field.
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Avatar universal
Dear All,
I have been reading all your postings for a couple of months now, and believe me when I say I understand your pain.
I was just a normal healthy person with no concerns in the world till this problem started in July'03. I went to my gyn. She said it was a sebaceous cyst/abcess and I had an I&D done. After three weeks of the surgery, the incision broke open, and the doc said I seemed to have developed a fistula : (

I have not rushed in to a fistulectomy, as the doc was suggesting. I was just checking on the web, and found this forum and all you guys, and decided to go to a colo-rectal surgeon. She says my fistula is complicated, and she doesn't want to go for fistulectomy. She is suggesting a seton. Anybody here who has been through this procedure who has been cured?

Also here is a link links which make me understand the procedure:
http://www.sma.org.sg/smj/4306/4306a6.pdf

But I know that only a person who has gone through this can understand and give the right advise.

Prayers & Thanks
Lotta
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Avatar universal
Hi

I'm 28, living in London, England.

I have been experiencing rectal bleeding now for just over a year, I knew I had this little cut just below my coccyx and thought that it was due to riding a new bike so I wasn't worried.

Just these last couple of months or so though, the bleeding has increased and there is more pain (pretty much all the time), so I went to see my Doctor.

He said I had TWO fistulas and has referred me to a surgeon. I don't have a date for this yet, but hopefully soon.

I have no idea how serious this is, or what it involves, so any information would be good. I have found lots of technical information on the internet, but very little from a patients point of view.

I will let you know how things go.

It's nice to have people to talk to.

Thanks

Z
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Avatar universal
Feel terrible about even complaining, but somehow maybe my comments can help someone or your knowledge help me.  Had anal abcess (large) in October.  Drained under general anethesia.  Never did feel right or heal and shortly (6 weeks) after developed fistula.  Doctor did fistulotomy in late Nov and put in stitch (seton?)  Still drains like crazy and stitch (knot) is uncomfortable as can be.  Doctor has never spoken about tightening, or as some have posted, being a long term thing.  He mentioned that after eight weeks it would be removed in surgery.  I feel, like most everyone else here like I am completely lost and that this is never going to get better.  Anybody with any insight?  Hope all are well as I know many are worse off than me.
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Avatar universal
JP4
Hello everyone. I'm a 44 yr old male recently diagnosed with a peri-anal fistula. This is all new for me. I've been reading as much as I can, and stumbled upon this gem. I've had ulcerative colitis since 1995 - mild to moderate, and mostly under control with immuno-suppressives (Imuran) and mesalamine (Asacol). I just experienced a UC flare up in Oct., and had bad hemmorhoids over the last year (lots of sitting in traffic and at work).  (I'd bet that all this has led up to the abscess/fistula...) I feel better now except for this fistula/abscess. The fistula drains, but it's manageable. The pain is minor, mostly just uncomfortable - only bad when the abscess gets enlarged, but then it drains and doesn't hurt so much. I'm scheduled for surgery at the end of the month for a fistulectomy. But I'm wondering, after reading other's situations, if I should even bother with surgery at all? What would happen if I didn't have the surgery, and just decided to live with the thing? My doctor (a general surgeon) was very up front, and told me that with my UC disease and the meds I take, that there was a good chance the fistula would return, and that healing could be tough. I'm really wondering if this is something I want to do... As long as the abscess can be kept under control, maybe there is no need for surgery?
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Avatar universal
Hi Everyone,
I am a 43 year old Male and was recently diagnosed with an anal abcess. This was after going to several doctors over several months with recurring rectal pain. He lanced it in his office (very painful) and told me it would take several weeks to drain, and then perhaps a fistula might develop. A week later the pain was unbearable and he reopened it, (VERY painful) and that lasted about a day. At least every other day it blocks up and becomes very painful until it opens back up. It has been almost three weeks since the initail procedure and I am at wits end. I feel crummy most of the time, and the pain is very uncomfortable when the abcess stops draining. The doctor is scheduling me for surgery and I have to tell you, after reading what you poor folks have gone through I am scared to death. :( I don't know what to do now, god this is frustrating and kinda scarey.
Helpful - 0
Avatar universal
I am so glad I found this discussion board and in response to "fistula friend" if you are still out there, I'd definitely be interested in a dedicated discussion board to the wonderful topic of chronic fistulas.

I'm a 39 year-old woman who has had a fistula for almost 4 years (it's rather depressing to keep track).  I have had 5 surguries, setons, failed flap repairs, etc.  I have seen 4 colorectal surgeons that tell me that complex fistulas are difficult to treat (no kidding!).

In the past year I have held off on surgeries since they didn't seem to be getting me anywhere.  I had the seton removed after 3 months (that was about 2 years ago) because I found it very uncomfortable and it was really never clearly explained to me how it would help me heal (it certainly didn't seem to do much good and I hated all that draining).

I currently have had some success with healing on my own - I no longer leak from my fistula after bowel movements, and my infections seem to be much smaller and less bothersome than ever before. I don't need to where pads but I do use baby wipes etc to clean after I go to the bathroom.  

Like another person on this discussion, after several surgeries I am not incontinent thank god, but I do tend to have less control over passing gas...It makes me very reluctant to have more surgeries.

I don't have Crohn's but this all started from constipation and a fissure - which one of my surgeons can't seem to grasp.  I also felt that my first doctor, who was a colorectal specialist, was incompetent, but then I learned after several second opinions, that either they all are incompetent or modern medicine doesn't have much to offer the fistula sufferer.

I definitely have struggled with depression, frustration, etc. but I actually have learned to live with this and be grateful for any of the progress I have made. I, like another commentor, wonder if I would recognize my life without the fistula. It sure has been "fun" sharing about it with my coworkers, boyfriends (I am now married) over the past few years (it's hard to come up with stories to explain all the surgeries, lost time at work, etc.)

I finally have a follow up appt with my doctor after 2 months of antibiotics which I thought were helping but now I really don't think made a difference (infections come and go, antiobiotics or not).

I let you know how things go. I hope people are still following this discussion board thread because it is so wonderful to know that there are others out there who truly understand what this is like.  I guess it isn't all that common...

Thank you all for sharing.
Helpful - 0
Avatar universal
I am so glad I found this discussion board and in response to "fistula friend" if you are still out there, I'd definitely be interested in a dedicated discussion board to the wonderful topic of chronic fistulas.

I'm a 39 year-old woman who has had a fistula for almost 4 years (it's rather depressing to keep track).  I have had 5 surguries, setons, failed flap repairs, etc.  I have seen 4 colorectal surgeons that tell me that complex fistulas are difficult to treat (no kidding!).

In the past year I have held off on surgeries since they didn't seem to be getting me anywhere.  I had the seton removed after 3 months (that was about 2 years ago) because I found it very uncomfortable and it was really never clearly explained to me how it would help me heal (it certainly didn't seem to do much good and I hated all that draining).

I currently have had some success with healing on my own - I no longer leak from my fistula after bowel movements, and my infections seem to be much smaller and less bothersome than ever before. I don't need to where pads but I do use baby wipes etc to clean after I go to the bathroom.  

Like another person on this discussion, after several surgeries I am not incontinent thank god, but I do tend to have less control over passing gas...It makes me very reluctant to have more surgeries.

I don't have Crohn's but this all started from constipation and a fissure - which one of my surgeons can't seem to grasp.  I also felt that my first doctor, who was a colorectal specialist, was incompetent, but then I learned after several second opinions, that either they all are incompetent or modern medicine doesn't have much to offer the fistula sufferer.

I definitely have struggled with depression, frustration, etc. but I actually have learned to live with this and be grateful for any of the progress I have made. I, like another commentor, wonder if I would recognize my life without the fistula. It sure has been "fun" sharing about it with my coworkers, boyfriends (I am now married) over the past few years (it's hard to come up with stories to explain all the surgeries, lost time at work, etc.)

I finally have a follow up appt with my doctor after 2 months of antibiotics which I thought were helping but now I really don't think made a difference (infections come and go, antiobiotics or not).

I let you know how things go. I hope people are still following this discussion board thread because it is so wonderful to know that there are others out there who truly understand what this is like.  I guess it isn't all that common...

Thank you all for sharing.
Helpful - 0
Avatar universal
Hi! Why us!  I never even new what a fistulas was and wonder if this is pay back for all the times I was a pain in the arse!

This is my story in brief.  In April this year a pain started and it was an ischiorectal abscess.  This had led to septecimia and the abscess was lanced under general anaesthetic with one nights stay.  Over the next few weeks the area was packed daily but a new infection set in despite many rounds of anti-biotics. About 7 weeks after the previous surgery a fistulotomy was performed and a seton put in place as the fistula went through the anal muscle.  This fistulotomy was deep and large and was packed daily for six weeks with the seton being left as a draining one.  It was done under general anaesthetic but again only needed one nights stay.  Then two months ago the seton was tightened, again under a general anaesthesia but I was home within hours.  I see the surgeon in December but the fistula is just the same as it was and both the surgeon and my doctor are talking about muscle flap surgery if this seton tightening fails.

Now it has just become a part of me. People have asked about what the seton feels like.  The one I have in place is a nylon thread
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