Flap procedure advice

[flowergirl]

hi all. haven't been here in a little while. i've been on remicade for the past year and have been doing relatively well, functioning in society and all :tongue: But, unfortunately the remicade only healed up a secondary branch of my fistula and not the original tract. sigh.
as background, my fistula goes rightnextto my vagina, but not in it, which i guess is a good thing. i went to see a colorectal surgeon yesterday. she says that laying it open isn't an option because of where it is. (i'm actually really glad about that. was worried about people accidentally cutting into my lady parts). i was hoping for something not very invasive. she seems to think that fibrin glue and plugs are fairly useless and wants to do a flap procedure.

was hoping someone had insight into recovery time, etc. she seems to think that i could go home either that day or the next, and be "back to work" in a week. i have no history of abscess or infection in the tract, and she saw no signs of inflammation or active crohns. it starts pretty low in my rectum.

my concern is that i have to drive 5 hours to get it done. my parents live where i'm going, so i have a place to stay. it's currently scheduled for 2 days after christmas, 27th. my husband needs to be back for work and i also have a remicade infusion on the 2nd of january. is this going to be horrible to try to do a road trip 5 days post op?

the surgeon seemed to think it doesn't matter when in the remicade cycle i do the surgery. is it smart to get one 6 days after surgery? i haven't had any problems with getting sick or infections on the remicade. in fact i've been pretty good about fighting things off.

anyway, hope some of y'all can help. i want to get rid of this thing, but i'm a little scared (and depressed) about the whole surgery thing.

thanks!

 

[Grumbletum]

Hi flowergirl. Good to hear from you, but sorry because it's cos you're having problems :-( I've not had the procedure so can't advise, but I know a few members have and will hopefully be along soon. Could you call the surgeon's office and ask for advice? I guess the other option would maybe be to move your infusion appointment either forward or back so that you have a bit more leeway timewise?

 

[flowergirl]

i'm already going to be about 5 days overdue for the infusion anyway. i should be having pretty much about the same date. i've gone a little over before and it's been alright.
it'll probably be fine. i'm just worried about infection, i guess. i haven't had any infection or abscess up to this point, so hopefully that's a good sign?

 

[Cupcake]

I have a very similar fistula, it tunneled out next to the labia. I have a seton placed in it right now to allow for healing. The two fistulas I have now branched off from a rectovaginal fistula I had for man years.

The hardest thing I had to deal with after surgery was the general pain in passing stools. I ended up slightly constipated from pain medications, so I had stool softeners added in to my regimen and that helped a lot. The problem I have now is after having a BM, I always have some drainage and I need to clean the area. I use a sitz bath or shower in order to keep the area clean. This also gives me troubles in being able to travel because obviously I can't use a sitz bath in the public restroom.

Best of luck to you with your surgery! I know it seems stressful but after it's done you'll be able to get a sigh of relief knowing you've made progress in treatment

 

[flowergirl]

cupcake - sorry to hear about your fistulas. they really suck, huh? i'm hoping since this is supposed to be a closing off procedure and not a seton that i'll get rid of the drainage. i am prepared for painful bowel movements though. yuck. i think i'll definitely stick with stool softeners, as pain meds constipate me too.

 

[Cupcake]

cupcake - sorry to hear about your fistulas. they really suck, huh? i'm hoping since this is supposed to be a closing off procedure and not a seton that i'll get rid of the drainage. i am prepared for painful bowel movements though. yuck. i think i'll definitely stick with stool softeners, as pain meds constipate me too.

I keep hoping I'll find some luck in pain killers that won't constipated me. Tramadol doesn't constipated me, but that's the only one. I avoid pain killers for as long as possible because of the constipation. It's the worst!

I wish you a speedy recovery and I hope your surgery goes smoothly!

 

[flowergirl]

i've never tried tramadol. i know percocet does absolutely nothing for me. the only decent one is hydrocodone. (is that vicodin?). i know i had most of the bottle left after my c-section. hopefully my high tolerance of pain will continue...

 

[sawdust]

Hiya flowergirl. I had the flap procedure. ...And knocking profusely on everything wooden within reach, it's been successful thus far, which is about a year and a half ago now. I'm not on biologics though, so I can't help you in that regard, but I can tell you about the recovery.

I can tell you that I was out 9 days for my flap procedure (which was perianal). They kept me in the hospital for a number of days to keep me from going to the bathroom at first. This was a strict no-food experience with an IV and catheter. The third day, my well-meaning roommate ordered me breakfast. :ymad: You can't blame him for trying to be helpful, I suppose.

Then, the surgeon gave the all clear for a clear diet and I went home when I I proved I could go to the restroom. I was on the all-clear diet for a number of days after that as well, and went back to work for light duty 10 days afterward. When I say light duty, I seem to remember that it really wasn't from the surgery very much, but from being so weak. I remember being quite hungry and a little grumpy at it, but there was NO WAY that I was going to cheat the timetable and mess all that up.

The pain was manageable and, while I did have medication I could take at home, I did not use very much at all. Everyone has their own pain tolerances I suppose, but I think we IBDers can hold our own. I hope that helps you some. I'm not sure how similar or not you'll find things to your situation, but I would certainly understand these kinds of details from your CR surgeon.

The strangest part of the whole procedure was that I remember thinking how weird it was that I didn't have a seton anymore. I really got used to it after a while, and once I was "normal" again post-surgery, it felt like that wasn't normal at the time.

 

[flowergirl]

sawdust- do you think the liquid diet helped you heal faster? i don't think they intend to keep me any longer in the hospital than they have to. i'm not sure about the diet afterwards.

 

[sawdust]

sawdust- do you think the liquid diet helped you heal faster? i don't think they intend to keep me any longer in the hospital than they have to. i'm not sure about the diet afterwards.

I can't say for sure, and it might be one of those things that is a key difference between my case and yours. I seem to remember that both the no-food hospital stay and the liquid diet at home afterward was described to me as to promote healing and to keep keep me from passing bowel movements past the area before it was healed. Your fistula may be such that these kinds of things may not need to be addressed as prominently as it was for mine. Your GI and surgeon are the expert on your case.

If you have any questions whatsoever, I wouldn't hesitate the least little bit to phone my surgeon. And also, I have always gotten a chance to talk briefly to my surgeon before surgery. I wouldn't expect a lengthy consultation, but when you are being prepped for your IV and talking with the anesthesiologist, just mention that you'd like to talk with the surgeon. A few quick questions to calm your nerves isn't out of the question, in my experience. :hug:

 

[flowergirl]

After the procedure, does anyone know if all gas and drainage just automatically stops on the open end?

 

[flowergirl]

just thought i'd give everyone an update:
so i had the surgery on thursday morning. apparently everything went pretty smoothly. they decided to keep me overnight, though. i'm glad they did, because it turned out i couldn't pee on my own and they had to put a catheter in. there was swelling in the rectum, and since it buts up against everything else down there i was too swollen for anything to come out the urethra. fun times.
pain is manageable. i was on lortab or morphine in the hospital. honestly the worst was probably the pounding headaches after the anesthesia wore off. it is pretty sore down there tho. mine is really for down in the rectum, so there's lots of nerve endings, unfortunately.
i got pretty down the next day, as i felt gas coming through the fistula hole and i thought, oh know, not already... but then i talked to the surgeon and she said you can't really tell yet, with all the inflammation and swelling, the sutures are going to stretch, and until they heal back together (hopefully) you can't really tell if it's going to take. so probably a week on that. later that day, and today though, it feels like things are going out the right holes now, so knock on wood, maybe this will work. they took the cath out yesterday morning and i was out by noon. i had to pee on my own first.
am back at my mothers house recovering. we actually live 5 hours away, so i'll be in for a long car ride in a few days. am not doing much except laying in bed and going to the bathroom, but i did take a shower this morning. yay!
this is less painful than my c-section.

 

[flowergirl]

oh, but guess what? i got my period yesterday, just to add insult to injury. it's like a war zone down there. i hate being a girl. lol

 

[sawdust]

I just wanted to let you know that I'm thinking about you and hoping for fantastic results for you. Hang in there, flowergirl. :hug: Please keep us apprised of your progress.

 

[flowergirl]

hey guys. pretty down today. had some more gas through the fistula hole yesterday and today had a little diarrhea and of course, some of it came through the wrong hole. i realize the dr said that i wouldn't really be able to tell for a week or so because of inflammation causing the sutures to stretch, and i realize i'm on the worst part of my period, and i'm sure that's making everything even more swollen down there.
but i can't help but think if crap (literally) is coming through there already, how on earth is it going to heal enough to cover the hole? would i know if the sutures separated? i haven't had very much bleeding from the backside that i can tell.
i'm so pessimistic and i'm going to be really pissed off if i already know it's not going to work, and yet still be in recovery from it.

 

[flowergirl]

so.... at this point i'm not quite sure in the flap procedure worked. it may have, technically, because i don't know that i have much of anything coming out of my old fistula hole.
unfortunately i now have a LOT of stuff coming straight out of my vagina. i haven't been examined, but i think what may have happened is that the flap covered the old hole, but the weak wall where they took the flap from may have made a new one. apparently my rectum does not like it when you shear it, whether it appears to be inflamed or not.
so now i'm stuck with a really big recto-vaginal fistula, so it essentially made things worse for me, as my old hole only came out next to my vagina, not in it. sigh.
i go back to the surgeon on monday for an exam (yikes) and to see what my options are. at this point i definitely don't want anybody poking any more holes in my rectum, as i'd probably just end up with more fistulas. i might have to get a temporary ileostomy, but what are the chances that would screw things up as well? i don't know.... i'm so confused. and upset that not only did this not cure me, but made me worse.
:mad2:

 

[sawdust]

I hope on Monday you can get some clear answers and a clear way forward with your doctor, flowergirl. :hug:

 

[flowergirl]

I'm a little worried because they mentioned a temp osteomy - which honestly doesn't sound bad at this point- but if I'm obviously not healing properly even though my guts look fine, would I end up with something terrible from that? So far I've had a colonoscopy which ended in a fistula, and now a flap procedure which ended in another fistula. I can't take any more of these things.