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4th surgery for Anal fistula, may need 5th. help
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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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Something for you to consider,
Botulinum Toxin for Anal Fissure

The toxin elaborated by Clostridium botulinum binds to the neuromuscular junction, preventing release of acetylcholine and thereby inducing profound paralysis. Injected locally in appropriate doses, however, this otherwise highly lethal substance has proved quite effective in treating a number of disorders manifested by intense muscle spasm (see "Botulinum Toxin: Potent Poison, Potent Medicine" by Lance L. Simpson).
Chronic anal fissure is a common disorder involving spasm of the internal anal sphincter. The aim of treatment is to reduce the hypertonia, which can be accomplished by lateral internal sphincterotomy. However, that procedure may cause minor but permanent alterations in rectal continence. An alternative approach has been local application of botulinum toxin or nitroglycerin ointment, with a view to effecting a medical sphincterotomy.
Investigators at the Catholic University of Rome have conducted a randomized trial of these medical interventions. Fifty consecutive adult patients with chronic anal fissure were randomly assigned to receive either 20 units of botulinum toxin (as a single injection into the internal anal sphincter) or 0.2% nitroglycerin ointment (as a 6-wk course of twice-daily applications to the anus and anal canal). Patients with acute fissure or in whom fissure was a complication of other medical conditions were excluded.
After two months, the fissure was healed in 24 (96%) of the toxin-treated patients and 15 (60%) of the nitroglycerin recipients (p=.005). Nine treatment failures in the nitroglycerin group and one toxin failure were crossed over to the other therapy, which resulted in healing. There were no complications of botulinum toxin. In contrast, five nitroglycerin-treated patients complained of headaches.
Brisinda G et al: A comparison of injections of botulinum toxin and topical nitroglycerin ointment for the treatment of chronic anal fissure. N Engl J Med 341:65, 1999; Hallett M: One man's poison--clinical application of botulinum toxin (editorial). Ibid:118
COMMENT: The U.S. Food and Drug Administration has approved botulinum toxin A for treatment of strabismus, blepharospasm, and hemifacial spasm. In these conditions, the injections must be repeated because their effects wear off within months. The nice thing about botulinum therapy of chronic anal fissure is that complete healing occurs after only one injection. In this vulnerable area, that sits better with me than even minor surgery.

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I am really sorry to hear this.  did you have a seton placed before?  were the other surgeries fistulotomies?  was infection or re-abscessing the reason for recurrance?  did they culture each infection?  I think I remember you saying that they ruled out Crohn's disease, right?  with 4 surgeries in 4 months, I think I'd go with the seton to give the area time to heal and sort things out.  I'm guessing that you've been on anti-biotics the whole time and are doing sitz baths and using stool softeners.  the sitz baths are what helped ease the pain the most for me.  oh, and if you don't have any packing anymore, but still need to cover the external opening because of drainage, I found the non-stick gauze pads to be gentler than regular guaze or pantiliners.  there are more extensive surgeries that can be done, using thigh muscles, etc.  

the fibrin glue results have been pretty good, I hear.  results of usage were reported recently.  you might want to check out the american society of colorectal surgeons at fascrs.org  I'd bet they have a summary of the info, maybe from thier annual meeting.  

best of luck to you
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No, I have not had a seton placed, or a fistulectomy, or fistulotomy.  Mine started with an abcess (abscess).  Then one doctor went in to tear away some muscle.  In the meantime, I sought a second opinion by a colorectal specialist. 4 weeks after the second surgery, I had emergency surgery because I started bleeding and my white count was 18. He also put in a drain tube.  That stayed in for 2 months. Had another surgery last Friday to remove the tube and he did a large advancement flap.  Stayed in the hospital another 3 days on I.V. antibiotics.  Yes, I have been on antibiotics for some time now. Tequin. So, after my visit this friday, he said I had an infection, opened up where the drain tube was, again,and said he still saw the fistula tract. I go back Monday to get rechecked.  Possible Seton placed. Now you see why I am so depressed.  Nothing has worked.  He has talked about the glue, but I don't know what is next.  Will I ever get over this. And if I have the fistulectomy, he said I might risk being incontinent.  This is the worse case he has ever seen.  I am just wondering if the first doctor messed up and did not know what he was doing.  He should have helped me when he drained the cyst.  Right?
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fistulas are unbelievable scarey things.  I'm really sorry you are having problems resolving yours.  it sounds like so far, you've had procedures done to incise and drain the abscess and then most recently had a flap repair done.  getting the abscess incised and drained was the right thing to do.  but there is always the risk of fistula development.  incontinence can be a result of a fistulectomy.  a lot depends on how much of the spincter muscle is damaged or scarred by the infection and healing process.  in some situations, a ceton can result in incontinence too.  but a ceton might help you until your infection is throroughly resolved.  because nothing is going to heal well if you keep getting infections.  

if your surgeon is saying this is the worst he's seen, you might want to consider finding another surgeon that has more experience with fistula repair.  is there a large teaching hospital in your area?  or a colorectal surgeon that 'specializes' in perianal Crohn's disease?  those would be your best bet because they would be the ones that have seen and dealt with a lot of complicated fistulas.

good luck, I hope the doc sees some positive changes at your visit tomorrow.
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Thank you so much for your replies.  I WILL post tomorrow and let you know how my office visit went.  I appreciate you and your concerns.  It helps to know some one cares.  If he states he wants to do surgery AGAIN, I will let you know.  Wish me Luck!
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Two years ago, my daughter had a fissurectomy - they anal muscle was cut. It was done with a local. She suffered so much before she had this procedure done. Not that it wasn't painful after - it was. But it got better after time. She also used nitrogyclerine ointment and this was helpful as well. Are you going to see a colorectal surgeon? That's the only surgeon I would recommend, because they are very experienced in this field. Good luck!
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Yes, I am seeing a colorectal surgeon.  The best in my area. sorry about your daughter.  I know they can hurt. i will know more tomorrow about my 5th surgery. My doctor thinks that I got this from a spider bite on my rear while painting my home. I have  been dealing with this for 6 months. And don't you know it is getting old. Just want my life back.
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I have suffered from anal fissures for 7 years. At the last count I had 4.
I had an anal stretch initially but this did not work and was then admitted for a sphincterotomy. When I was given the full version of the operation and the risks I decided at the last moment not to have it. I have other health issues and did not want to end up with an incontinence problem as well.
I was given the 0.2% ointment which was excellent but always had problems when I went to collect the presciption as it had been made out as 2% every time so I gave up in the end.
I do need to get the problem sorted out and would consider Botox as an option.
I was told by the Consultant that the more fissures you have the tighter the muscle becomes as the brain sees this as a way of protecting the area from more damage.....unfortunatley then the straining gets worse and then more fissures......so a no win situation.
You all have my sympathy I know what you are going through.
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An update from my doctors appt.  He found some infection, not as much as last Friday.  He wants to see me on Thursday and he put me on flagyl.  If I am not better by then, I will have surgery for a Seton placement under IV sedation.  Hopefully, it will be an out patient.  Wish me luck for Thursday.  I will let you know.
Thanks
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Good luck and let us know what exactly happens and how you get on.
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I feel for you. I myself am about to undergo fibrin glue surgery on January 16th (my third surgery for anal/vaginal fistula). I've had two flap failures, and am frustrated like you. But wanted to reassure you about the seton placement, because I just had this done two weeks ago. The procedure itself wasn't bad. The shots were the most painful, but if you have a good surgeon, he'll go slow and massage the area. Just remember, it's not the needle that stings, it's the medicine. After the first few shots I didn't feel the rest of them, nor did I feel anything else. Take some pain medicine as soon as you can after the surgery (ask your doctor - depending on the sedatives they give you). I was in moderate pain directly after the sedatives wore off. It's not too bad if you can take pain medication and just go to sleep. The seton took a little getting used to, but it's not even been two weeks and I'm not even bothered by it.
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Could you please give me more details on this seton placement. I did not know there were needles involved, or did you do this in his office.  I will be put under I.V. anesthesia as an outpatient. Geez, needles. He said I had to go back once a week after it is placed to tighten it.  What is involved in that? He talked to me about the glue.  He said it doesn't work for most people. Seems like I am running out of options here if the seton doesn't work. My last resort is a Fistulectomy and I don't want that yet. The risk of being incontinent is my fear. It scares me to know that I could soil my pants and not know it. I am too active for this.  I am a bad patient because I am a nurse and I expect miracles.  you do not know how much "patience" I have learned with this problem. And this is the word my doctor uses. Patience. He must have made a fortune just on my rearend. Well, I go tomorrow for a check up to see if the flap finally worked.  If not, I will go Friday for my surgery for the Seton. I will be glad when I can finally get on with my life. Please let me know about the Seton thing. Thanks so much!
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Oh, by the way, I forgot to ask.  Why are you having the glue if you just had the seton.. Did that not work?  Or is this extra precaution to fix this problem? Thanks
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good luck tomorrow Giblett.  sometimes seton placement is done using local anesthetic and sedation.  but sometimes the doc wants to do a thorough evaluation and explore the fistula tract and maybe clean it out a little.  that requires a general anesthesia.  well, I've heard of a few people that have endured that without sedation or general anesthesia thanks to a particularly uncaring surgeon.  my motto has always been.... "knock me out and wake me up when it's over".

actually, I'm trying to schedule an MRI of my pelvis to look for possible abscess/fistula development....... again.
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Your kidding.  Another one. Geez, what in the world is causing these? I feel for you also.  I know how frustrating this is for you. I don't think I could take a local for the seton placement. knock me out too!
Thank you for your concern.  It is good to talk to people about this and know they understand what you are going through. Do you have any idea how you got yours? you would think they would go in and close this shut so nothing could get in there. But, I know the end result, fistulectomy.  And I want to avoid that if at all possible. Good Luck Kimbcat.  My prayers are with you.
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thanks!  I really appreciate the kind thoughts.  

I've had quite a bit of perianal Crohn's disease (an inflammatory bowel disease).  fistulas, abscesses, fissures, etc are complications of the disease.  recently, I've been getting fissures around my labia and perineum and I've been having a lot of pressure from inside my pelvis pressing out.  I have a permanent ileostomy, so no rectum.  doc felt some fullness in the area upon exam, but can't tell if it's just scar tissue from prior surgeries or not.  I've also been getting a lot of infections due to the medications I'm on.  so he wants an MRI to check everything out, since MRIs are better than CT and ultrasound at finding fistulas.
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I am so sorry.  I did not know it was this bad. God, and I have been complaining. I really feel bad for you.  I sure hope your test come out o.k. I am going to put you on my prayer list. Makes you wonder why, doesn't it. But I realize how many people I can help just by talking to them.  And you have helped me alot.
Blessings to you!
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Went to the doctor today.  He wants to wait until next Thursday before doing anything else.  He said I had some infection but it is looking good. so, The news of not having surgery tomorrow was a blessing to me.  will keep you all posted.
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good to hear!!!!  moving in the right direction.  take it easy, tho, ok?
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Hi, I am new here, I just was surfing and found this website. I wanted to share what I have been through in the past month.

I went to my GYN because I had an anorectal abscess. He sent me to a surgeon and it was cut and drained in his office. It was horribly painful.

After 12 days, I still had draining and some pain. My doctor found that I had an anal fistula and I needed surgery to fix this. I had my surgery almost 3 weeks ago now. I went to see him for a followup and he said it is healing the way its supposed to and he wants to see me in another 2 weeks. This was almost a week ago now.

I am doing OK, but I am still not comfortable all the way. I still have some swelling down there but most of the drainage is gone away. Its starting to close up. He said its healing from the inside out.

I am a 29 year old woman who never has health problems. This whole experience has freaked me out to tears. My quality of life has not been too good over the past month and yet I am still not feeling the greatest. I am in total fear that something is still wrong even though my doctor looked at it a week ago and said its doing well. I just wanted to share my story because it seems like some of you KNOW what I am going through because NOONE in my family or friends has a clue here as to how I feel.

I have been so depressed about this. Its been a month and its constantly there. Anyone that wants to comment I would greatly appreciate the support here. I hope and pray every day this goes away and that I am well again soon.
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Hello, just wanted to say I though I had it bad, my heart goes out to you all. I wanted to pass along, that I too have had 4 to 5 surgeries and my last one my doctor, who is a colonrectal doctor, who listen, takes time to explain everything, also his staff. My last surgery, a Seton Placement was inserted, and althrough it has been in for two years now, and I have not any more lumps or boils come up, just every month I go in to have the seton tighten, now afterwards, it's sore, but nothing a little pain medicine can't take care of. At every visit to the doctor I'm asking when will the seton be removed, but reading someone else pain, last night I thought about the different things that you were going though and maybe I should let it stay in as long as possible. So just try the Seton
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Hello, just wanted to say I though I had it bad, my heart goes out to you all. I wanted to pass along, that I too have had 4 to 5 surgeries and my last one my doctor, who is a colonrectal doctor, who listen, takes time to explain everything, also his staff. My last surgery, a Seton Placement was inserted, and althrough it has been in for two years now, and I have not any more lumps or boils come up, just every month I go in to have the seton tighten, now afterwards, it's sore, but nothing a little pain medicine can't take care of. At every visit to the doctor I'm asking when will the seton be removed, but reading someone else pain, last night I thought about the different things that you were going though and maybe I should let it stay in as long as possible. So just try the Seton
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Hello, just wanted to say I though I had it bad, my heart goes out to you all. I wanted to pass along, that I too have had 4 to 5 surgeries and my last one my doctor, who is a colonrectal doctor, who listen, takes time to explain everything, also his staff. My last surgery, a Seton Placement was inserted, and althrough it has been in for two years now, and I have not any more lumps or boils come up, just every month I go in to have the seton tighten, now afterwards, it's sore, but nothing a little pain medicine can't take care of. At every visit to the doctor I'm asking when will the seton be removed, but reading someone else pain, last night I thought about the different things that you were going though and maybe I should let it stay in as long as possible. So just try the Seton
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Hello, just wanted to say I though I had it bad, my heart goes out to you all. I wanted to pass along, that I too have had 4 to 5 surgeries and my last one my doctor, who is a colonrectal doctor, who listen, takes time to explain everything, also his staff. My last surgery, a Seton Placement was inserted, and althrough it has been in for two years now, and I have not any more lumps or boils come up, just every month I go in to have the seton tighten, now afterwards, it's sore, but nothing a little pain medicine can't take care of. At every visit to the doctor I'm asking when will the seton be removed, but reading someone else pain, last night I thought about the different things that you were going though and maybe I should let it stay in as long as possible. So just try the Seton
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HI, I'm new here and thought I would tell my story since I found yours helpful.  I went in for surgery for an Anal Fissure and Hemorrhoids in late October 2002.  I'm 26 yrs old and male.  The surgery didn't go well for some reason and the doctor came out and told my wife I was going to have a tough recovery.  Boy was he right.  I had nothing but pain and bleeding all the way to May 2003, where I developed an abscess under a Flap the surgeon created over the anal fissure.  I tried paging the doctor, but he was on vacation, so I went to the E.R.  They were confused that my doctor didn't have a backup.  And assigned me to see a new surgeon the following day to take care of the abscess.  It was painful, pussing and bleeding.  At the new surgeons office, (surgeon #2).  #2 told me that I had abscess and that he would have never done the very extensive knife work that #1 did.  Nevertheless with tears in my eyes in face of worthless local anethestic he cut open the abscess.   2 weeks later I was back at surgeon #2 since the abscess was reforming again.  He told me I had a fistula as a result of the anal plasty (flap over the fissure) that was done.  So we went to the operating room for examination under anethesia and possible fistulotomy.  surgeon #1 had already done a full colonoscopy so there was no concern over other conditions.  #2 said that until the abscess clears, he could do no definitive treatment, so he put a loose seton through the fistula tract and we left it there for 7 1/2 weeks.  I worked from home and took sitz baths 4 times a day with my laptop and phone on a table next to the tub.  On tuesday 7/6/2003 I went in for surgery to try cure the fistula.  The surgeon #2 said if the fistula was simple he would just lay it open, otherwise he would use fibrin glue after cleaning out the tract.  Unfortunately it turned out to be a DEEP fistula, and he couldn't cut it without comprimising continence.  So he tried the glue.  I've been having pain and discharge still, so I'm really worried it didn't work.  Not only were things easier to manage with the seton, it was also not as messy.  This has been going on for 9 months and I'm really frustrated and anxious, since my job is suffering and its interfering with my life in a big way.  I'm ready to throw my hands up in the air and say "does anyone know what they're doing to me?".  Its 2003. And we're still referring to procedures figured out in 500BC.  Thats how old the seton procedure is.
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Well, I wrote in a few weeks after I had surgery for an anal fistulectomy.

I wrote that back in April and I just went in last week for my second anal fistulectomy surgery. The track was further up this time.

Needless to say, I have been really depressed. I have problems with diarrhea and constipation and I know that has not helped my fistula either. I hope this surgery works but I am so scared this wont work either, but I am trying to think positive. I read so many things and god I hope this time I heal.
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Hi there, I'm new and after reading everyones story I'd like to add my own.At 35 I developed my 1st abcess (abscess). Went in for an emergency drain.It redeveloped after bad aftercare and a fistula developed along with a sencond one. Went for more surgery to lay the two fistulas open.All of this has been going on for a year.I missed 4 months of work and stayed trapped in the house most of the time.The daily visits from the nurse to re-pack the very slow healing wound became part of my daily torture routine.Six moths ago the doctor diagnosed Crohns disease.It felt as if my world ended-but ofcourse it does not and we have to carry on.After my last operation another fistula developed.I have been on antibiotics like forever.My surgeon suggested a seton placement today.I told him that I would think about it.I am already not as airtight as I used to be and I do not want to have any unecessary surgery if I can get away with a seton.My question is - what doe it feel like? Are you constantly aware of it? Can you feel it when you sit? O boy! All my empathy to everyone in the same boat.It takes time to recover but I felt much better when I started resuming a semi-normal routine.If you can walk and talk then get out there and do stuff.It beats sitting at home watching day-time tv :)Best wishes iJo.
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Hello everyone!

I have read all of your postings and I feel your pain!!!  I was diagnosed with an anal fistula last year.  I have no history of Crohn's or anything.  Anyway, I had an Ultrasound, MRI and I was told I need to have surgery.  The surgeon told me that he would go in and if he discovered that he had to cut too much muscle, he would have to put a "string" in there.  That was the terminology he used and that I would have to live like that indefinitely with a string hanging out.  I told him I would get back to him.  Now, I can't stand the draining and the itching anymore.  I need to do something.  My problem is that I am a 33 year old  female and I have a little bit of pride left and I am not feeling too excited about  the string or I am assuming this is what is called a seton.  What I am wondering is if anyone has had the seton and what it is like?  Is it very noticeable?  Will it be in there for the rest of your life or how does it work?  My surgeon never even mention the fibrin glue that I have been reading about.  Then again, I might be worrying all for naught, the fistula could be taken care of with the fistulectomy.  I am thinking about going to my doctor and asking her to refer me to another surgeon to get a second opinion.  Any of your comments would be greatly appreciated.  Thanks so much and my best wishes go to all of you who are experiencing the same, if not worse!

Cheers!
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Hi.  I feel sorry for you all.  I am undergoing my 4th surgery in 10 months this monday and am getting frustrated.  I am in my 20's and am embarrased to tell my friends what the real issue is I am having.  I thought my first 2 doctors were in the wrong by not being able to fix my problem.  At first, they just drained an absess (abscess) and now I have gone to a colon/rectal specialist who has done a colonoscopy last Friday.  He took 3 biopsies and should have the results before my surgery on Monday.  He thinks I may have an infection in the colon causing these infections.  I am a full time student with a job, a husband, and a new house.  I am tired of feeling run down all the time.  I was a very active person before this happened and now it takes all of my energy just to get through the day.  Although I feel for you all, I am happy to know there are others out there who have had the same reoccuring problems as I do.
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I have had an operation on (my first) complex fistula, which was rather large.  The surgeon placed a seton and said not to pull on it at first, and after about 8 weeks then I was to pull until it came out.  The seton didn't hurt, but I had persistent drainage wtih it.  He stated that some fistulas required more that one operation.  I asked him about getting antibiotics, because I noticed there was still infection, but he didn't offer any unless I asked for them.  Also, he didn't prescribe them for more than about 7-10 days. I mashed on the infected area to keep the skin from trapping the infection, but I don't know if this will keep me from having another operation.  I was tired of the drainage and the soreness from pulling on the string(seton).  Then I began to pull from the back instead of the front, and halleluah! the seton came out. I still have a little soreness, but am going to see a gastroenterologist to be sure that this was/is just a normal infection.  What I am curious about is that a book(rather old)that I was reading stated that the packing  gauze should be replaced daily to ensure that the wound healed from the inside out.  My surgeon never mentioned packing more gauze.
Also, I wondered if anyone experienced terrible fatigue and brain fog with this condition.
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Hi Everyone
This is giblett, now giblett1.
Just wanted to give you an up date since I posted a while back. I have had a total of 9 surgeries since this all started. I have has this problem with a fistula since last august.  My last surgery, the doctor wanted to do an reversible illiostomy. I refused. So, he put in another seton made of Silk and it has been in since June. So far, I am back to square 1. But, hopefully this will take care of it.
I am like you all, so tired of having this problem. I am in good health otherwise. I feel for all of you and am at my wits ends to the cure for this thing. Has anyone had any results since I posted last. Would love to hear from you.
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Giblett,
I am so sorry that you are experiencing all of this. You are in my prayers. I have just been diagnosed as having a fistula and I am terrified. My surgeon told me he wanted to perform a fistulotomy, but after reading all of your accounts I wonder if it's going to help or cause more problems. I don't know what to do..to have the surgery or not..not that I have much of a choice..the surgeon told me I didn't have much of a choice, and that not having it could cause a secondary fistula. So far I've had the abcess (abscess) drained 3 times. One thing though, that I am not hearing anyone say that their surgeon mentioned. If the abscess is caused by an anal gland becoming blocked and filled with bacteria which then leads to the fistula forming...then it would seem reasonable to destroy the gland. If the surgeon can locate the anal gland that is the culprit, then why not destroy it? Also giblett1, did your surgeon give you any indication of whether there is an end in sight? Also, why did you decide to refuse the illiostomy?? Giblett1, please respond as soon as possible as I may be going through the same things soon. Any advice for me? I'm just as upset as everyone else here.
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Also wanted to comment on everyone's individual situation:

Therin, I have also been experiencing terrible fatigue. I get extremely tired during the day to the point of almost falling asleep. My energy is way down. I don't know specifically what you mean by "brain fog" though. I have had trouble making decisions and have become somewhat forgetfull but I attribute that to the fact that I am so anxious about all this.

Bliss32, did you get the seton? How is it working out for you. Did the doctor indicate whether it was permanent? Hope your doing well.

IJO, I'm so sorry that you have been diagnosed with Chron's disease. How are you feeling? Is the Chron's manageable? Have you been experiencing terrible symptoms bcse of it and are they able to control it?

Cheryl74, I hope you're doing ok and that surgery for the second fistula worked. Please write back and let us know whether it was successful or not.

Tcipress, how are you doing? You've been through so much, you're in my prayers along with everyone else. Please write back and let us know how it's going.

Silk, you've had a seton for two years! Wow. Is it still there? Did the doctor say it would be there permanently? I've never heard of it being in place for so long. What is your doctor's plan? Hope your doing well.

Kimbacat, my heart goes out to you. You too have been through so much. Please write back and let us know if you've had any success with any of your recent procedures. You mentioned fissures around your labia. Did the doctor say it would get better or keep recurring?

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continued:

Giblett, you have also been through so much. Flap failures etc. How is the drain tube working for you? Did your surgeon indicate what his plan was? Also, have you had the fistulotomy or fistulectomy yet? I thought that the flap surgery was suggested only if a fistulotomy or ectomy failed and they had to explore another option. But I'm not certain. How is your condition and is there any other way you would have done this if you had to go through it again? Any regrets? Please write back and you're in my prayers.

Sweetcin, I'm so sorry you've had two flap failures as well. How is the seton placement working for you? Hope your doing well.

Also, can anyone comment on whether the seton placement interferes with sexual intercourse? How has everyone been dealing with that issue? I think that's a valid and very important question.

You're all in my prayers.
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Hi Hope!
I am sorry that I have not responded to your questions.
Hope to be of some help.
I didn't have the fistulectomy/otomy because I have a complex fistula. It is horseshoe shaped and any fistulotomy can cause incontinence. (Loosing your bowels).  Some people can get this done if it is a simple case. What you are describing, about your recurrent abcesses means you need to do something. I was so sick with mine. My white count was up to 18, which is high and I was so sick. It can also cause you to feel ill, tired and not want to do anything. This is because the infection is in your body. I was almost toxic by the time I decided to get mine drained. I have had the advancement flaps, drain tubes put in, 2 setons, one with a rubber band and now a silk one. This allows for drainage. If you can tolerate alot of pain, my suggestion to you is to have the cutting seton. This will be tightened over a period of time and will cut through so you can heal from the inside out. I could not tolerate the pain. I wanted to die! I couldn't work. All I did was cry. I did try the "Fibrin Glue" They mix this in the operating room with your own blood and it forms a patch like clot which aides in healing. I thought mine was healed after that, but got a bad stomach virus and it came back.
If you have had one opinion, seek another and someone that is a colorectal surgeon. Not a general surgeon. Colorectal surgeons have more experience with these.  Believe me, I could write a book on this. I am not out of the woods yet. My doctor is now talking a cutting seton, which is basically the same as the rubber band because we have used all our options except the fistulectomy. And because alot of my muscle was cut, I stand a chance to be incontinent. But, he said he could fix that. Reconstructive surgery in the future.
If your doctor thinks a small amount of muscle is involved, then go for the gold. Get it over with. But remember, they can come back. 50% of rectal abcesses will be fistulas. I was one of the unlucky ones. And fistulas can come from over abuse of laxatives, hemorroids (hemorrhoids), constipation and anal sex.
So, I wear cotton balls or gauze everyday because of the leakage and a pad just in case. And now, if this heals, I think I will have lost something cause I am so use to it. I went into deep depression because it can interfer with your relations with your spouse. I didn't feel much of a woman after all of this, but I had a understanding husband and doctor that pulled me through this. Not saying that I won't get that way again.
Please do something soon! Get a second opinion.
Please respond and let me know what has happened and what you have decided to do.  Do your homework. Look at sites on the internet, library or what ever to understand this. It helped me and it will help you.
Good Luck my firend!
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To answer your question, a seton can be a rubber band that has a small clamp on it. You realy do not know that it is there except when you bath or wipe.  A silk seton is just what it says. Silk sutures put in. I don't know it is there except when I have to pull on it. and I do this every other day hoping it will cut through.  Very important! Take atleast 2 sitz baths a day. Morning and night. Stay in the water for about 15 minutes. (Will seem like eternity). I work and I find time to get up earlier to do this and take my last bath before bed.
Good Luck!
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Hi Everyone,

Hope, thanks for your kind words. Yes, living with Crohns is an ongoing struggle. I am taking medication (Pentasa) which my Dr says I need to stay on indefinitely. If these don't work then steriods or immuno-suppressant next. Anyway, I am having a Seton placed tomorrow so I will have more news about how that feels soon. I'd rather avoid having any intervention but we all know we have to live with this. One person at work told me that she has a similar problem and it was wonderful to talk to someone who understands! At present I am fortunate enough to be able to work and get on with living but I recall and empathise with everyone stuck at home recovering. I remember a time when misery ruled my days but recently I have changed my attitude and I am holding onto every good moment I have! There are moments when I am distracted, when I forget about this wretched fistula. Try laughing out loud at least once a day even when you don't feel like it. Laughing changes brain chemistry and promotes healing - so give it a go :) Hugs to all. iJo
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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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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.
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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.
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Hi Everyone,
I am a 43 year old Male and was recently diagnosed with an anal abcess (abscess). 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 (abscess) 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.
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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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Feel terrible about even complaining, but somehow maybe my comments can help someone or your knowledge help me.  Had anal abcess (abscess) (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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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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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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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 (abscess). Abcess (abscess) 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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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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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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Hey everyone Im 16 years old and had an anal abcess (abscess) when I was 8 years old.  The problem was then eradicated until February of last year when I discovered another abcess (abscess) 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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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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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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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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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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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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