ANAL FISTULA'S

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Poorlybot
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/14/2009 5:59 AM (GMT -7)   
Hi people, I have been having problems finding a forum solely for Anal Fistula's. You see I dont have Crohns I just suffered from a perianal abcess which turned into a fistula. I have had numerous different types of surgery and none have them have worked. I can not have the flap surgery as I have been told by my surgeon that there would be to much of a risk that the Sphincter muscle would be damaged. I am due for yet another procedure in which they use fibrin glue. I was wondering whether anyone has had this surgery and was it sucessful? I currently have a seton in place which is driving me mad as it it so hard to keep clean...... I am also concerned because the last bout of surgery I had was a new plug from America which went completely wrong and resulted in me having 2 lots of surgery in 1 week and Iwas in recovery for 4 and half hours the 2nd time round and hooked up to a morphine drip for 3 days. If anyone has had the fibrin glue was it painful and did it work. I have been told the success rate is not very good this is really my last hope if not I will have to live with the seton which makes me feel dirty. Anyway sending all my love to people who suffer with these horrible things xxxxxxx

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/14/2009 3:13 PM (GMT -7)   
If you click on the fistulas link in my sig, you may be able to find some info about the glue plugs. I haven't finished the list of URLs yet, so some sections are a bit more detailed than others.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ArtistMum
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 8/28/2009 4:46 PM (GMT -7)   
I thought I would reply and add to this forum because I was searching for help and the anxiety of one of the mums on the board made me feel that perhaps I am NOT going crazy. I need help because my husband can't help me anymore and friends don't want to know.
 
I have had four surgeries this year. The last one was the fibran glue to seal it all up. Its been a month since that surgery. I been thruogh the drains, the setons, the waiting. Now I thought I was on the home stretch. But still, NO, yet again, I think I am going insane. The scar will not heal. After another round of antibotics and three days repreive it finally healed. Oh my God, I thought, I am going back to Yoga, I am going to smile more. Be more positive, optimistic...blah blah
 
Then last night at 4pm it hurt to sit down. Oh no, please dear God. And there it was , right in the middle of the scar is STUFF, yes, stuff that needs to be pushed out. So yhet again the skin is broken, its sore and bordering on needing antibotics. So it would appear I am healing, then getting sore again and healing , then getting sore again. I dont see my surgeon for another month but I can go on. I have bipolar disorder, so my anxiety and ups and downs are difficult as it is. But now, I'm thinking, this operation has not been a success. I am self diagonizing myself again. I can't get out of bed. Whats the point. I feel down again.
 
I can't try and see the surgeon till next week and then will I go on a healed doy or a puss day. My husband yelled at me last night because he said I am doing it all wrong. But what am I doing wrong. I am trying, I am trying to get on with life but what am I doing wrong. Its been a year now of no intimacy, a year of looking at my bum. I look at my bum on average five to six times a day. I am going Insane. I am going to go completely mental. I don't see a light at the end of the tunnel. Has anyone , I mean anyone ever got over this fistualla deal or is it the rest of my life. I don't have Chron's , so they say. But I do have a whole in my bum and it makes me feel dirty, it makes me feel defeated, it makes me feel OUT OF CONTROL, it makes me frustrated, angry and alone. Worst, it makes me feel alone and sad.
 
I need support.
 
My name is Billy and I am a 47 year old mum and artist and I live in Australia. I need support. Any support, any emails, anything at all. I just can't get out of bed today. I am just so alone. Billy
 
I would like to get in contact with poorlybot. I tried to email you personally but it blocked me. Please send me your email or facebook page. I think we are in the exact same place. I need someone to talk to. I could ring you on Skype. Or I could email you. I need a friend and I think you do also. Billy (Belinda)

Post Edited (ArtistMum) : 8/28/2009 5:51:12 PM (GMT-6)


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/28/2009 5:35 PM (GMT -7)   
Here is what i have to say...I only have Crohns..in the peri-rectal area..its called peri rectal disease..so those out there..who have a fistula and constant abscess..i say..you TOO HAVE CROHNS...AND DON'T LET THEM TELL YOU OTHERWISE...thats why your fistula is so vicious...thats why it doesn't heal...the thing is..you need a good seton..that drains it all together to the point where little to nothing is going into the fistula..and then you need a medicine that can target that area...like Remicade...alot of the other procedures like the fibrin glue have high fail rate or the plug...i have heard nothing but problems..and cutting the sphincter is risky...you have to look and find a doctor..who is on the top of their game..my surgeon just when putting in the seton..was able to shorten my fistula and make it smaller.....therefore less to heal and easier to drain..making it faster for it to heal..I also..have not had sex in a while..and look at my buM way too much..you are not crazy and you are not alone...and sometimes husbands..just don't understand..and they don't get it...its not that you do anything wrong..god only knows..you would do anything to get rid of it..so i say research a different doctor if you are not satisfied with yours...its your body...and your life..take care...to clean a seton..you can not only soak, use a shower sprayer..just get in the bath..use epsom salts..but you can look at your bum with a mirror..take a clean q tip dip it in peroxide and gently dab at the seton and the area where its tied...that helps alot to get it clean...and just be careful not to get the peroxide anywhere else..you can also just get a spray bottle and spray yourself down..after each time you use the bathroom..and just skip the toilet paper use pampers baby wipes..they are the best..

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa prednisone cipro flagyl vicodin Ultra

waiting on Remicade


ArtistMum
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 8/28/2009 6:28 PM (GMT -7)   
Thanks frogeleita

I am starting to think more about Chrons myself. I need to get to the bottom of it all. Ha ha. NOT goinng to look at my butt today. Not going to talk to husband about it today. Going to get up and do my art. Thanks for talking to me about it. I need to keep the faith and find out what my next plan is. Its hard, the mental anguish that comes with this. I just need emotional support and being here is the right place for me. I needed to hear from another woman who knows how it feels. Thanks for taking the time to speak with me. Belinda

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/28/2009 7:13 PM (GMT -7)   
I have had my fistula for 4 years. My surgeon told me to stop being so anal about cleaning it. I laughed and he did to! I just shower like normal, and wipe like normal and don't do anything else to clean it. I do keep a 4x4 folded gauze sponge on it to catch the drainage. And I change it every time I use the bathroom. And far as sex goes...why would you stop having sex because you have a fistula?! I certainly don't let my fistula stop me! Don't let this get you down...it's just another hole in your butt.

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/28/2009 8:10 PM (GMT -7)   
your welcome..and you can email me if you like..i will post the link under my profile..if you need someone to talk to..do what makes you happy..pretend you don't have a fistula..just try..to be happy and smile:)

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa prednisone cipro flagyl vicodin Ultra

waiting on Remicade


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/28/2009 8:13 PM (GMT -7)   
ha ha chroniemomx...prior seton..i had sex..maybe when i get my new seton..i am gonna do it..i did have a draining fistula for eight years and i had two babies in that time! lol...your comment cheered me up!

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa prednisone cipro flagyl vicodin Ultra

waiting on Remicade


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/29/2009 6:58 AM (GMT -7)   
Hello Artist Mum,

Abscesses and fistulas are more common than you think and you do not have to have Crohn's disease to get them. Diagnosing Crohn's Disease (CD) in the peri-anal area is easier because they can biopsy tissue and determine whether it is CD. So let the doctor's diagnose you.

Have you ever seen another surgeon? I don't know whether yours is good or not, but it never hurts to get a second opinion. Finding a good colo-rectal surgeon who knows CD is the best idea -- even if you don't have CD. They will be up on the latest techniques. I was diagosed with CD by biopsy, and I only have it in the perineal area (between the anus and vagina). I have a fistula that branched so I have two setons. I decided to stay with the setons for a long while to let the area heal before I tried the plug or advancement flap procedure. My doctor says the tissue needs to be healthy or the procodures won't work. Unfortunately, it takes a good long time -- many months to a year -- for everything to heal after a big abscesses. You just have to be patient. The plug also has a poor sucess rate even in non-CD people, but it can be tried repeatedly. As for sex, I think it all depends on the location of the seton or fistula. When they are in the perineal area, I think it would be difficult for both people. I just htink it is case-by-case.

I know how stressful this all can be. It can really knock you off your balance. I can't imagine dealing with all of this when you also have bi-polar. In your posts, you sound like you are realizing that you are having great difficulty dealing with everything that is happening. Do you think it is time to seek professional counseling? Honestly, your posts are really concerning and I strongly suggest you seek counseling immediately. They can help you get a more even balance and work with you over the long term. It sounds like you are really hurting and I just want to see you get help and get better.

Take care.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/29/2009 7:12 AM (GMT -7)   
frogeleita...glad it cheered you up! :)

ArtistMum
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 8/29/2009 4:18 PM (GMT -7)   

Hi Fall Colours,

 

WEll I was getting councelling but you only get 12 free sessions a year here and my therapist doesn't take paid customers. Yes, our system is different over here. I love my therapist and she is supportive. She even has another patient going through the same thing, a male. I did end up calling her. Today my fistula wound has cleared up again. If I went to the surgeon today he would think I was insane I reckon. But then maybe two days later it has discharge and pain and redness again. I dont' know whether I'm coming or going.

I have to tell you though, being on post with you guys is helping. I have contact , I have support. I need to stay on the site until I get better. I can only get support from people who know exactly what its like. I will watch my depression closely and monitor my moods.

Ever since the last surgery I have had stomach pain and pain all down my left side which stops me from sleeping at night. My body is not the same. I went back to Yoga on Friday and it felt good but my body aches like it never did before.

If I go to my doctor she over dramatises. She wants me to come in on Monday and get the nurse to dress the wound and put some sort of dressing that sucks out infection. This concerns me because I'm not sure if the surgeon would approve. I just don't want a new bunch of people looking at my bum. Its so alwful. I think I should wait to see the surgeon. Should I tell him its flaring up and down. Should I tell him about the stomach pain and the rest. I just can't get much out of this man. He is the best colorectal surgeon in melbourne by the way. He is meant to be the best. They just don't say much surgeons. I think maybe because they don't know themselves?

Don't worry about me. I am out of bed and doing things again. I have a huge challenge with this as it effects my bipolar in such a way. But I know how to ask for help. I know how to reach out. I won't do anything silly, even if I actually say I might. Been there before, many many times. I will not suicide over a hole in the bum. I will not give up. I promise. Billy



Belinda "Billy"


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/30/2009 5:07 AM (GMT -7)   
Hi Billy,

I am glad you are getting some relief. It is hard being on the internet and not being right there with you. We just get what you write and honestly it concerned me. I'm glad you called your therapist, maybe she can find a way for you to see her.

I am not completely clear about what you have. It sounds like you have a fistula and you had the glue procedure. It will take time for the body to grow into the glue and heal up completely. If you are getting puss drainage from it, it probably didn't work. But you need to let your surgeon see it. He will be able to tell by looking at it. You don't have to wait for a "puss day" -- he is trained and will be able to see it. He may use a soft cotton swab around the fistuals and send it to a lab to see what bacteria is in it. If he finds bacteria found in the rectum, then the glue failed. But it may just be fluid that the body is using to grow into the glue and heal. You just need to let him do his job and stop second guessing him. During my first abscess, when I knew nothing, I found my guesses and dire assumptions were usually wrong. The nurse was very helpful in educating me too.

Take care.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


ArtistMum
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 8/30/2009 5:10 PM (GMT -7)   
Hi Fall Colors, its Monday. I am on my third day of no discharge or pus. WEll SAturday was clear, Sunday was clear and today is Monday and so far so good. I rang the nurses and surgeons office and spoke with them and they said hang in there and call immediately if it flares up again. The skin around the wound/fistula is starting to feel soft, in other words, you know that stretchy , red, painful look is gone today. Its soft, normal colour and not doing anything. Could it be healing. Could I have misdiagozed myself and could it have possibly been trying to heal. I won't get my hopes up. I will try and keep my energy low and be more sensible about the whole thing.

I realize now my husband just has to distance himself from me because he can't handle the ups and downs. I will keep a close diary with you all. Because I know if it comes back this week I am going to hit the ground with a thump. Right now I am cruizing, cruizing and waiting to see what happens. Its been 1 month and a week since surgery. One more month to go before I make my 2 montly appointment with surgeon Mr SKinner. I will then finally have some sort of answer. I guess this is why they make the appointment 2 months away from the glue procedure because they won't know either.

I certainly had this glue procedure as a complete failure on Friday. Today Monday I don't know, maybe it was something else. I do know that having bipolar and dealing with it has been so hard. Ever since I first contacted you, its been a roller coaster of emotions. If I had a mother, or a sister or a friend who could help carry the burden with me but I have had little emotional support and that makes it hard. Keep in touch with me. I need you this week. I thank you for supporting me. Just know you are there this week has made a difference. If I had to call you on Skype I could do that also. But for today I am ok. Thanks and big hugs for supporting me. Billy
Belinda "Billy"


bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 8/30/2009 9:15 PM (GMT -7)   

Poorlybot and Artistmum - I too have thought I would go crazy over this anal abcess/fistula mess and my surgeon also won't commit to anything.  She just says it all takes time.  I've had the first surgery for a large abcess and drains put it.  Then the drains were taken out for about 6 weeks.  Then she put in 2 seton drains - 1 at each end of the place where the abcess was.  I saw her 2 weeks ago and she suggested another surgery in about 4 weeks to "have a look". 

I've had to learn to accept that this does take some time and it's not like other areas of the body that seem to heal quicker.  She's trying to avoid making me incontinent, so is taking great care.  I would love for all this to be over and am sorry for all who are having to go through it.  Probably like most people, I had never heard of any of this, so that makes it all even scarier, and it is hard or impossible to discuss with most people - they just don't understand what we are going through.  I do agree though that if you can try not to focus on that area so much, it becomes something you mainly think about just at bathroom/shower times.  I only deal with my surgeon for issues and questions - my family doctor and other specialists are fairly clueless about this stuff.  If you are having pain or see consistently more drainage/infection, give your surgeon's office a call.

I'm trying to listen to the good advice of FallColors and others and busy myself with other things and have faith that if more procedures are in order that I can have the strength to get through it.  Hopefully, we can get these beasties to heal up nicely and put it all behind us soon (no pun intended).

 

 


ArtistMum
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 8/30/2009 10:08 PM (GMT -7)   
Dear Bluemum51
 
I am one operation away from you. I first had the exploratory op Jan, then the abscess got messed with and I ended up in hospital for 9 days with septicimia. Then after that stay and a surgery to put the drains in they sent me home for a month or so. Around April, I think I had the seton put in. Then after another few months, I think it was end of July I had the fibrin glue and sentons out. Then for a month now its been touch and go with infections and pain and not knowing.
 
However, today is my third day of no pain, no pus, and Lord, I shouldn't say it, but the wound looks like its healing. Am not going to jump to conclusions. There must be a reason they make us wait 2 months to give an all clear. I have to do exactly what you and Fallcolours says and that is keep busy. Do things, stop worrying and get busy. Its been a hell of a year. I discoverd it in August 2008 and its now nearing the end of August 2009. The things we didn't know about and know now. I guess they don't tell you because if we knew things before they happened we might get really depressed. So thats why , its one day at a time??? Oh yea...because if I knew I was going to be in and out of hospitals for a whole year I wouldn't have believed it. Today I am still good. And guess what, instead of going to the bathroom to look at my bum or have another shower...I am going into my art studio to paint. Yea.
 
Love all my new friends on this thread. Love you all to death. Big hugs, I wish we could all go out and sit in front of a nice fire and drink coffee and laugh and chat about it all. That would be really nice. BillyLee
Belinda "Billy"


tazzytebo
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 10/9/2010 12:33 PM (GMT -7)   
Hi All,

I wish you all good luck. I also had two abscess and were drained by general surgeon. He called me to his office for nearly 10 weeks and then one fine day raised his hands saying it is out of his reach and referred me to a colon rectal surgeon office and not a particular surgeon. I had to call them and find who is available. I got an appointment and the colon rectal surgeon suggested who was using this old technique of changing the vick/gauge pieces every week. She immediately performed a procedure in the same week and put two setons to drain the fistula tracts till it matures
The only problem I am facing is the colon rectal surgeon is busy and i get appointments after 6 or 7 weeks even to meet the doctor. It has been now nearly 6 months when my first abscess was drained.
I never sat really for last 6 months. I either stand or lay down. Yesterday I was scheduled for a procedure and my insurance denied that it is experimental procedure. I was surprised that doctor's office never told me this before that it happens for the option suggested by the doctor

Can you all imagine I came to know about my denial of procedure only 12 hours prior to my scheduled procedure

I have been through lot of struggle and still struggling. Please let me know if there are any other options

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/9/2010 1:31 PM (GMT -7)   
Well, Tazzy, all I can say is that that is truly shocking.

It would help us to know what sort of procedure was going to be done this time. Was it another seton placement?

I'm Australian so can't really advise on the insurance issues, but did want to offer you my sympathy. I'm so sorry you're still in a lot of pain.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~
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