ANAL FISTULA'S

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

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)

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

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:)

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.

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

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

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

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.