Help - So worried

[foxfire_joy]

I apologize in advance for this long post - but here goes.

In Spetember this year - I noticed a bump between my butt cheek and vagina. Thinking it could be anything I let it go for a while - it got larger - finally went to the gyno who said she thought it was a cyst. Told me to apply heat with moisture. One week later - it swelled to the point of real pain - I went to see her - sh said it's an abcess - it needs to be drained.

09.27.11 A general surgeon hospitalized me to drain a peri rectal abscess. He discovered a fistula and did a fistulotomy.

10.05.11 CT scan showed a small ancess in the area of the original abcess.

After 6 weeks of packing the abcess, continual drainage and pain, he finally conceded that it might be a recurring fistula and referred me to c colorectal surgeon.

11.11.11 Went to see said colorectal surgeon. He thought the fistula was still open and suggested placement of a seton to allow it to drain. Apparently I have a very complex fistula that traverses lots of sphincter muscle = very bad. He said at some point he would recommend a bio-lift procedure. He explained that it would be very tricky for me to have children following this procedure and there is a 30-40% chance of incontinence:yfrown:.

11.15.11 Seton placed. Doctor told my dad that he "may" tighten the seton on my next visit. He doesn't want to do anything further until I see a gastroenterologist - consultation scheduled for 11.29.11. On my 11.11.11 appointment he said that he could schedule the bio-lift as soon as the gastro rules in or out Crohn's (my mom had it).

I have a million questions - I have been trying to do the reasearch. I obviously don't want to take a shot on a procedure that could affect my continence (I am 32 years old). The kids - I can handle that, I guess, not thrilled about it.

I know the seton can be left in indefinitely - thoughts? Experiences?

Anybody had this bio-lift? Negative affects?

I have read about the fibrin glue stuff (doesn't seem recommended for complex fistulas), plugs (not good if it happens again), the bio-lift - seems also that is you have a recurring fistula also might then be irreparable.

I AM SCARED to DEATH. I cried myself all the way to the seton placement and have been crying everyday. My job is an outdoor job - that if I can't control my bowels - I can't do. I am so glad I found this forum - I thought I was alone.

If you can provide any insight on your experience with leaving the seton in or a procedure to actually repair the fistula - I would be so grateful.

 

[Crohn's 35]

:welcome: to the forum, I can't answer your questions because I don't have your problems but need to bump up your post because I see you have been missed. I am sure someone with your situation can help you. :hang: we are here to help you. Hope you get relief soon!

 

[gulugirl]

Hey Foxfire. Really sorry to hear all the grief you're going through.

 

[foxfire_joy]

Thanks Gulu. Yeah - I am trying not to be disheartened. I already don't like the fact that I haven't talked to the surgeon since the procedure - so I am getting things in bits and pieces. Also not sure about the extent of the incontinence - would like that defined. I don't even know what percentage my fistual traverses the sphincter muscles.

I try not to feel sorry for myself - but I don't understand why this happened. As far as I have read, it doesn't look like there's anything you "do" or don't do to make it happen.

I have alot of questions about all this to ask him. Tenatively, I have decided that well enough is good enough and to leave this seton in place - without tightening and try to maintain a normal life for a while before I just jump in to anything - I want to make sure I uinderstand.

I really appreciate your reply. What are some good resources - I seem to hear conflicting things - like - I thought the plug was a bad idea because if it happened again - could be difficult to repair...

Again thank you. I certainly hope something works for you at some point. This is such a wierd thing o have happen at all...

 

[Rivers]

I dont see how having a fistula would in any way affect your ability to have children.
Did the MD give a reason why? It sounds ridiculous to me. Even with a seton in, why would that affect childbirth or pregnancy?

I dont know what the biolift is? Is it the LIFT technique?

I would see a different colo-rectal surgeon and get another opinion.

Hope you feel better.

 

[foxfire_joy]

Rivers - Thanks for the reply. I think - and I am not sure, the reason it would affect my having children is because once he does this procedure - I would imagine that the pressure from carrying a child - and definitely the force of pushing suring birth could compromise the surgery. He said "it would be tricky".

The bio-lift - from what I can understand is the "lift" technique - except the put a bio mesh in between the area where the fistual is separated to prevent it from rejoining.

I don't know, the more I think about it the more pissed off I get because I haven't even talked to this guy since he put the seton in. I know for him, this is probably routine - but for me - a second butthole with a rubber band in it is far from routine. I am not sure if I am being too picky - I don't know what the standard is. Is it normal not to talk to your surgeon for three weeks following a procedure? He told my aunt and dad stuff - but they are elderly and didn't get the full picture I don't think and wouldn't know what to ask.

I am frustrated - but thank god for this website - because I am piecing together information as I go. I see this guy again on the 12th or 13th and have a barrage of questions - so I hope he's blocked out enough time. As far as seeing another colorectal surgeon - it is definitely on my list before anything else happens with this thing.

When I go to see another surgeon - I guess I should have my records faxed to them first?

Thanks again for replying. I really feel like I am just treading water and don't know what to do.

 

[Crohn's 35]

Titus :welcome: to the forum, your first post should be on YOUR Story but I dont have the capacity to move it there. You are in a dilemma, having to sit in a crane the bouncing around is hard on anyones body (my husband is a heavy equipment mech now supervisor) and he tells me no matter how many shock absorbers or suspension it is still a killer. No you shouldnt be operating on a machine with meds, you could endanger yourself or someone else. Some one mention a anaesthetic type pain control to help but I havent had your problem but I am sure it hurts like hell.

Sorry to not being able to help, put your story on your own thread and someone can help you.

 

[cindybindy]

Bio Lift Surgery

Hello, I am new to this website but have been reading about the fistula's, seton tapes etc that everyone is experiencing. I have a complex anal fistula and have had 2 seton tapes in place for almost 2 years. I was going to have the mucosal flap surgery but decided against it and now have been told about the Bio Lift surgery, which is the lift with the bio mesh inserted. Can you please let me know if you went ahead and had the surgery or if you know anybody on here that has so I can get their opinion. I so want to do something, anything to get rid of these seton tapes but would like to speak to someone who has had the surgery first as I don't want to end up worse than I am. Thank you so much

 

[Thirdtime]

Foxfire

I hope this encourages you more than discourages you.

I had a similar presentation of a fistula. Gyn thought it was a cyst and we let it go. It swelled to a painful small balloon. I saw a general practitioner who thought it was an abscess and it was drained right there in his office - I thought I would pass out from the pain. Turns out it was a fistula and I should have been in a surgeon's office.

A seton was placed and it was a small loop. Surgery was tried to repair it and that failed - this was attempted 2x. I had to have a ileostomy put in to help it repair all the way - that was the only solution for me. I waited a long time to get the take down (reconnection) and had tests run to make sure the fistula had closed. Indeed it had. I was reconnected and the best news of all is that a couple of years later I successfully gave birth to my son.

Of course because of the issues with "that area" and the possible damage to the repair there was not going to be any natural child birth - c-section was planned.

I hope that gives you some hope that there are options and that child bearing isn't out of the question.

I have a fistula again but it has been 10 years. I have an ileostomy again too and am in the waiting/ repair process.

Hope this helps you. You are definitely not alone!

 

[RFarmer]

Hello, I am new to this website but have been reading about the fistula's, seton tapes etc that everyone is experiencing. I have a complex anal fistula and have had 2 seton tapes in place for almost 2 years. I was going to have the mucosal flap surgery but decided against it and now have been told about the Bio Lift surgery, which is the lift with the bio mesh inserted. Can you please let me know if you went ahead and had the surgery or if you know anybody on here that has so I can get their opinion. I so want to do something, anything to get rid of these seton tapes but would like to speak to someone who has had the surgery first as I don't want to end up worse than I am. Thank you so much

Have you tried having them out yet? It might be worth a go to just have them out for a while. Sometimes these things heal on their own, complex or not. If things screw up, you can always reinsert them!