New to the group - fistula surgery experience

Fistula support sub forum. Are you having, or have you had surgery for a Fistula? Or are you just looking for information? We will help where we can and are here to offer support, member-to-member. Check out our Fistula Success Stories sub-forum too!!

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New to the group - fistula surgery experience

Postby saskiamom » 19 Feb 2012, 16:36

Hi everyone, I'm a 36 year old female, mom to 2 kids....and I've been diagnosed with a fistula. I'm going in to see my Colo-rectal surgeon tomorrow. I'm on my fourth or fifth surgery now (honestly loosing count!) with a seton placed currently. I've had the plug surgery done once before and it unfortunately failed. My surgeon says we'll need to do the plug surgery at least one more time, perhaps 2 more times before progressing on to the other more surgically invasive/involved options. I guess I'm here seeking advice from anyone who perhaps has had the plug surgery done and if it's ever successful for anyone? I'm trying not to be impatient, everything I've read indicates these things take a long time to heal, it's just been a long road for me trying to give myself the time to heal while not feeing neglectful of my family, etc....ugh! Thanks for listening... Image
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Re: New to the group - fistula surgery experience

Postby Guest » 19 Feb 2012, 16:52

I don't have a fistula, but wanted to welcome you, though I'm so sorry you've already been through so much with surgeries. When you say the plug didn't work, did it fall out, or did the fistula just fail to close with it in place? No progress with the seton, either? I had a friend who finally had success with a seton, but it took a really long time.
There are a lot of people here on the board who have or had fistula, and o if just browse around a bit you'll be able to find a lot of info. and support.
I hope your visit with the surgeon goes well, and that something finally clicks for you with healing.
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Re: New to the group - fistula surgery experience

Postby saskiamom » 20 Feb 2012, 12:49

thank you jr2, I appreciate the response! : ) I just got home from my appointment and basically my fistula is in a Y shape with the bottom of the Y shape originating inside and then heading out toward the skin branching out into the two different tracts.
I guess my surgeon didn't discover this until after the plug surgery failure, when my abscesses returned it appeared the first abbess was feeding a secondary one, when in fact it was a branch of fistula off the original tract feeding the second access (ouch!) I'm not quite sure of the logistics of my plug failure, I'm guessing I passed it without knowing...I knew it failed when those abcesses came back (awful!) Went in for a new seton placement surgery and my surgeon made the new discovery of the Y shape tracts.
So, long story cut short, he has recommended that we proceed on to the LIFT procedure next which we will do sometime in May to accommodate a trip overseas I have planned. Until that time I'll be living with my bright red friends Seton 1 and Seton 2, lol! ; )
At least for now I have minimal discomfort and only have to deal with the sitz baths and little drainage. I am actually excited about proceeding to LIFT, the thought of going through the plug surgery again was depressing to me (with it's low success rates.) I would have done it again as many times as he recommended it but the impatient part of me wanted something more aggressive. I know the plug works for some but the odds seem better with LIFT perhaps and I'm willing to endure some extra discomfort/bit more risk for the chance of being done with this.
Anyway, what a great group you all have going here. Nice to have a place where one can talk about these things with others who will respond compassionately and not judge. Hopefully I'll be able to shed some light on this for others with similar issues. : )
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Re: New to the group - fistula surgery experience

Postby Guest » 20 Feb 2012, 23:25

Your outlook is really inspiring, and I think your story will be very helpful to others. The LIFT is quite a bit more aggressive as you already know, and it would be really great if you would continue to post updates as you progress through your treatment and recovery.
Did you have fissures first, or just the initial abscess that kicked off this whole ordeal for you?
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Re: New to the group - fistula surgery experience

Postby sterlingbird » 21 Feb 2012, 21:32

I am having a seton done Thursday so I am wondering if you have any advice on care or tips for pain relief?
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Re: New to the group - fistula surgery experience

Postby fistulaproblems » 25 Feb 2012, 12:24

Hi Saskiamom, Welcome to the forum. I haven't had a plug yet but had 3 surgeries over past 9 months. First 2 were fistulectomies and the last one was a seton placement on 2/22. I too am looking for answers. If seton does not work....I will have to move on to other forms of treatment. Did your CRS tell how how long does it take to figure our if seton is working? Did you have fistulectomies? I can totally relate with part of feeling neglectful towards family. Please keep us updated on how you are doing and how the LIFT procedure goes.
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Re: New to the group - fistula surgery experience

Postby saskiamom » 28 Feb 2012, 12:16

Hi everyone, will try to answer all your questions.
"Guest," this whole ordeal started with an abscess for me, not sure how the abscess came to be exactly...but that's what got me to go see a Dr initially. First doc gave me antibiotics out the kazoo...nothing helped and I went to see a different primary care dr. out at Mayo clinic who then referred me to a colorectal surgeon.
"Sterlingbird," I know that seton's are not comfortable, some people on other forums have said that after a while they don't know they are there, lol! My experience has always been that I'm always a little aware of their presence, ha ha. My best advice is to really take the time to do at least three 15 minute long, hot sits baths daily (as hot as you can tolerate, don't go scalding anything though!) I had this set placed 1/27 and they hadn't been bothering me too badly till I went on a "girls getaway' trip with a friend this weekend, then of course, they started hurting like all get out. I just took hot showers to try to relieve the discomfort as I was stuck in a hotel but when I got home and started up the sits baths again, I feel much better. I use 6.5 inch gauze pads over the setons every day to catch drainage, etc.....I change them every time I go to the bathroom. It's crazy, if you'd have told me a year ago I'd be walking around with gauze pads tucked into my tush everyday I would have laughed, but they don't bother me too much anymore, at least not as much as the setons do, in fact they make the setons more bearable IMO. After this weekend, I've decided not to forgo the LIFT procedure, I called and told the doctor's office Monday that I felt I'd made a huge mistake asking to wait and they scheduled me to do the LIFT 3/15....so I'm going to get this thing over with, please pray that it works!!!
Fistulaproblems, wow, I feel your pain, I really do, this isn't easy to fix is it? Never ending surgeries it seems! : ( Have you had a cutting seton placed or a draining seton? My setons have always been temporary measures simply to keep things open and from getting further abcesses until the next surgical maneuver, so I really don't have an answer as to how long one would take to work per se....as mine were never actually meant as a real "treatment." My surgeon did say this current set had to be in place for six weeks prior to this LIFT procedure if that helps any?
Anyway, hang in there, I am confident there is an end to all this, just have to keep plugging away until we find the solution that works for us individually. Good luck everyone and yes, I'll keep you posted. 3/15 isn't too far off. If anyone has had the LIFT procedure, either successfully or not I'd love to hear your experience. I wonder what it feels like if it's failing, if you get another abscess or just never stop draining, etc...how long it takes to heal....all the stuff you want to know but your surgeon doesn't seem to have the answers to lol! ; )
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Re: New to the group - fistula surgery experience

Postby fistulaproblems » 09 Mar 2012, 18:38

Hi saskiamom, how are you doin. i just visted my crs and got a chance to ask him a few questions for first time after my seton placement. he has put a draining seton but mentioned that it will also cut as i move around. he wants to wait for another month and then assess if i should have another fistulectomy, advance flap or a fibrin plug. he did not mention anything about LIFT. good luck with you LIFT procedure and please keep us updated on how it goes.
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Re: New to the group - fistula surgery experience

Postby saskiamom » 16 Mar 2012, 10:14

Hey fistula problems, I just had the LIFT done yesterday. It was very painful yesterday but I'm feeling allot better today. On bed rest for a week, then have to take it really easy for a few weeks following. So far not much to report other than I'm resting up and feeling really positive about the outcome so far. I'm experiencing a little bleeding at the site which was to be expected but what's got me so hopeful is that it's just blood that I'm seeing, none of that white gooky stuff that I'd see when i had the Setons in place. All that leads me to believe that the fistula may actually be really closed up well by the three sets of stitches he described would be done. So I'm very hopeful at the moment, and knocking on wood! : ) At my pre-op appointment Tuesday I heard the term "horseshoe fistula" for the first time which I suppose refers to the Y shape I described in earlier posts. Anyway, hang in there and please keep me posted on how your treatment progresses, I'll be sending you positive thoughts for healing and for staying positive while your going through all this! : ) I'll keep everyone posted as my healing progresses, hopefully all good news going forward.....should have a post op in two weeks so I'll check in again then. I know reading people's success stories have really helped me keep going while all this has been happening so I truly hope I can share a positive experience with everyone as well soon! ; )
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Re: New to the group - fistula surgery experience

Postby saskiamom » 20 Mar 2012, 18:21

Hi everyone, just checking back in, trying to document this to help others considering this surgery for themselves. I'm on day 5 post surgery. I'm still in some pain but it's bearable, I took the prescribed pain meds for the first two days or so but didn't feel I needed them after that. I'm still on my first week of bed rest and I'm taking it easy, I am not going to take any chances with my recovery at all. I am still experiencing a little bleeding from the surgery site but it gets lighter everyday so I'm taking that as a good sign of healing. For the moms out there you'll understand that with a newborn you obsess about their poop, color, texture, lol! I've been obsessive like that with my gauze sponges. I have it in my head that what I see on that gauze is an indicator of my healing progress/success....so I've been paying close attention to the amount of blood/etc that I see. In addition to the blood there is a faint yellowish colored watery like secretion I'm experiencing and occasionally a tiny bit of leakage. This may be TMI for some so I'm sorry if it is, but I hope/think it's appropriate given the subject matter! I'm thinking that my muscle strength down there will improve as I recover, eliminating the leakage issue....I'm curious what my surgeon will say about that? I do NOT feel incontinent and am able to use the restroom as normal. Upon my surgeons instructions I'm doing two sits baths a day in addition to my morning shower. I'm on a 10 day regimen of cipro and flagyl which I've been taking religiously, again, not messing around with this recovery! ; ) Trying to think of everything here that I'd have wanted to know pre-surgery...okay, last thing, my surgeon mentioned using a piece of mesh....not sure where that mesh went or what it's purpose was exactly, but if you are considering the LIFT procedure perhaps this would be something for you to ask your surgeon about? Think that about covers it. If your the praying type please pray for my recovery. I'm missing going to Disney World with my family this week while I'm recovery and I'm getting tired of being sidelined by this!!! Image I'm just envisioning my flesh coming together and being completely healed, picking that in my mind, sticking with my post-op regimen and prayer are getting me through this!! Image
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