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Living with a Fistula !


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#1 TFGB

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Posted 13 January 2012 - 12:45 PM

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Hi all ... it's been a while since I've visited this site ... I am 41 years old (female) living with a fistula since January 2009. The story is long but here's where I am now: since October 2009 I keep the original opening open by poking the fistula to keep it draining daily. I wear a guaze to catch any drainage. I see my colo-rectal surgeon every 6 months and I really like him - he hasn't pushed me either way - to have surgery or not. I get the sense from both my family doctor and surgeon if it isn't causing you 'trouble' then leave it alone. So I'm used to my routine and extra toiletries (gauze, baby wipes, etc) but how long will I live like this?

Is there anyone out there who has chosen NOT to have surgery - what is your situation ??

And -- if you have had fistula surgery - how was your recovery?

Signed - scared of surgery!

:( TFGB


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#2 hope4

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Posted 13 January 2012 - 11:48 PM

Hi TFGB,

I am a 49 year old female. I have had a fistula with seton since 2010 and it really doesn't bother me as much as I think others have been bothered with theirs. I mean, I hate it for sure because it's high maintainence! And another reason I hate it is because I have Crohns skin tags and the seton irritates it everyday, and it feels like little needle pricks, and I think it causes more inflammation in that area because of it. I don't suffer with bad pain. My colo-rectal surgeon just told me to "leave it alone" but I don't want it there forever! I mean how long can it last without turning into to something bad eventually? I mean can't it turn into cancer at some point? I am very scared to have surgery. too. I mean what if it gets worse? What if it doesn't heal because of the Crohns? What if i get incontinence? etc. etc. Yea, I tend to try to not think about all that but it's in the back of my mind. I take it one day at a time and hope someday their will be a better way to treat it and help it heal better.

Sorry you had to go through this. I know how sad it is. It's like living in a nightmare and not waking up. But I tell myself, the nightmare could be a lot worse, and I am thankful I don't suffer with pain. Very thankful.

hope4

#3 alexphuongvu

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Posted 25 February 2012 - 12:08 PM

when my GS first confirmed that i have an anal fistula, i was in total denial. he offered to do a fistulotomy with a possibility of cutting seton. i freaked out because i heard the procedure was pretty painful and invasive. i told him surgery will be my last resort and went home. since that visit, i was unable to sleep and have major panic attacks. i finally decided to go through with the surgery to but my mind at ease. fistula if leave untreated, it could branch out and form new tracks. I really don't want to stick gauze in my ass for the rest of my life.

feb 21 i went in for surgery. i was extremely nervous. less than 10 seconds after they administered the GA, i was out cold. next thing i know, i was in the recovery room. right when i woke up, i started getting super anxious and my heart was racing. I was worried that the doctor would come in and tell me some bad news. like i have a high fistula or that i got a cutting seton (heard its extremely painful when it cuts through your muscle). It turned out, i had two fistulas.One i know about and the other one was much smaller and superficial. if i didn't have the surgery, i wouldn't know about the second fistula and could have let progressed and get even worse.

i'm 4 days post-op now. the pain is not too bad. your body is more sored than in pain. but now it's all has subsided. the pain meds made me constipated, so the first bowel movement was a little scary.

#4 tom

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Posted 04 April 2012 - 01:35 AM

hi all,
please try 1 tea spoon of Ghee and glass of warm milk twice a day, one in morning and one at night see if that would cure your fistula?
thanks

#5 henryt

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Posted 16 April 2012 - 02:58 PM

I'm deciding (now) whether to get fistula surgery or not. I have a fistula - that began 5 years ago - and has only recently recurred. I have a CRS appointment tomorrow, and I will be in the beginning of the decision process after that.

I was living with a mostly closed - quite possibly fully closed fistula - for 5 years. A good 4.5 of those years were without symptoms - so life was really good then! Now I'm dealing with daily life - using gauze pads - and getting back to my sitz baths too. We will see what course of action I decide on. The current meds of Cipro and Metronidozole are tiring - but necessary to keep infection low.

#6 alexphuongvu

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Posted 18 April 2012 - 04:06 PM

I had surgery about two months ago.I did a fistulotomy. Surgery was successful. Been abscess and fistula free since. However this whole ordeal has cause me great anxiety and suffered panic attacks. So I been dealing with that. My mind is so used to worrying. But things are looking much better. I feel for all of you. It's not easy but don't give up hope.

#7 henryt

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Posted 19 April 2012 - 10:23 AM

I'm glad to hear you are doing well.

I have anxiety as well. It's a surgical procedure - and you don't really know what the outcome is going to be (fistulotomy or seton placement) - before you go in. I have suffered with some pretty intense anxiety for years and years, and I am dealing with the anxiety over this condition and it's treatment now. I am planning to get a second opinion, to see if there is a way to determine the extent of the fistula before surgery. I met with one surgeon who said it appears somewhat superficial - but he won't know the extent of the sphincter cutting until he gets in and then I could wake up with a seton and the possibility of another surgery. I really hope to avoid the seton placement and second surgery.

Keep us updated as to your progress. It's good to hear a fistula success story!

#8 alexphuongvu

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Posted 20 April 2012 - 01:06 AM

Doctor told me the same thing. He said fistulotomy with possibility of seton. Fortunately is was low enough I did not need seton. After surgery I had drainage for like five weeks. Now it's completely healed without drainage. Postop pain is not all that bad. When I was under, doc found two fistulas. It was shock to me too cuz I thought I only have one. Both were superficial so I was somewhat lucky.

#9 henryt

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Posted 20 April 2012 - 08:26 AM

It seems they really don't know what they are going to find (until they get in there). With your doctor finding two - and both of them being superficial - that's some good news that they could both be handled with the single surgery.

I have significant anxiety, and that doesn't help. I am so concerned about the outcome if a seton is used and then a flap is needed, as I have heard the success rate is only 50%. I will do some additional research, and get a second (and possibly third) opinion.

I also know what you mean with regard to living with a fistula, as it's not fun sometimes. I was basically symptom free for 5 years, and I think I aggravated mine by bike riding - on a bike with a seat that was too high - so I had to stretch too far to reach the pedals. As soon as I came back from the ride - I could feel something had been injured. I was hoping it was just soreness, as I don't ride often (as I prefer to run). If I had only decided to just take a run instead! Oh well - that's life!

#10 alexphuongvu

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Posted 20 April 2012 - 10:44 AM

I had my surgery with a general surgeon. I did scheduled an appointment with a colorectal surgeon for a second opinion but the date was too far out. I couldn't wait that long. I couldn't sleep three days in a row. My anxiety were extremely high. I was worry about my health being deteriated from all the anxiety and so in desperation, I went with the general surgeon.

#11 henryt

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Posted 20 April 2012 - 01:41 PM

I understand. It's impossible to wait when your anxiety gets going. All you can do is think and think about it. It's good your general surgeon was a good one - and he was able to handle it as he did. I'm glad to hear your story, as I have some similar thoughts. I keep obsessing about the fistula - and I don't like the feeling of my mind racing all the time.

#12 alexphuongvu

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Posted 20 April 2012 - 02:22 PM

You should go with the surgery. Tell your doc when u are under, if it's superficial and low then do the fistulotomy but if it's not then don't do anything. This way at least u know. For me, I knew my was low because I can feel the fistula track. When I try get pus out from the external opening, I gently press and massage the track to guide the pus to the opening. That's how I know mine was closer to the surface of the skin. Also, I had little stool residue and fart gas coming out the fistula sometimes.lol

#13 henryt

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Posted 20 April 2012 - 02:56 PM

I appreciate your thoughts. I think that's a good course of action. I just need to find a surgeon who will agree - when he goes in - to not do anything if it can't be done through fistulotomy. I think I would rather deal with the fistula sometimes than deal with a seton and then the chance of having a second - flap procedure. I have been told it's basically 90% chance they can do the fistulotomy - and not the seton procedure - but he wasn't 100% sure. It's that 10% that concerns me - and if I have his agreement - then I would be happy.

I don't know if it's effective or used anymore - but I would like to have a surgeon who would use the fibrin glue - if the fistulotomy couldn't be done. Just to try something to close the tract.

#14 alexphuongvu

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Posted 20 April 2012 - 07:57 PM

I had all the fears that u had but I couldn't deal with the day to day anxiety and sleeplessness. Everyday was sitz bath and changing gauze. I couldn't even concentrate at work. I took two weeks off even before the surgery to deal with anxiety. After surgery I took another two months off to heal. I didn't need that much time off but it was approved by the doctor. I applied for short term disability and I got it. I don't know how some people live with fistula for years and years because they fear surgery.
Fibrin glue is more effective if your tract is narrowed and not wide.
I know how comforting it is to talk to people who been through this. When I had it, it was so hard to find an active forum about fistulas. All the posts are from years and years ago. I felt like I was the only one with this condition. I'm here if you have questions or just want to talk. I've been through so I know how difficult it is. I lived with it for 5 months before I decided on surgery.

#15 henryt

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Posted 23 April 2012 - 08:22 AM

I appreciate your support. I also have significant anxiety regarding this condition and I also have a bit of fear of the surgery. It is very true - this condition is more common than most would think. It's just not talked about, and it's hard to find support and information (that is not just medical journals). I think you took some excellent steps, and took the time you needed to heal - that is great. I don't think I can take that type of time off from work, but I will take what I can. I have a young daughter, and I don't want to miss any chance to play with her, so I am quite concerned about the down time after seemingly invasive surgery.

Again, your support and insight is very helpful, and I thank you.

#16 exit 4

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Posted 25 April 2012 - 10:08 AM

My advise, do not rush in to surgery. Have you been diagnosed with IBD? If you have, then try Cypro/Flagyl/Remicade. My pre fistula surgery issues were very little compared to what I have to deal with now. I don’t want to scare you but here is my story.
I was not diagnosed with Crohn’s till after my fistulatomy surgery, up until then I was told all I have is colitis and fistulatomy will heal in 6 weeks. After 4 month’s of not healing my GI had me do Serology 7 test that came back positive for Crohn’s with UC futures. Fistulatomy was performed in October of 2009; I now have what is called a keyhole deformity. Basically, my wound healed, but did not close at anal verge – exactly from my old external fistula opening down to my anal opening. It is leaking post BM, I have to wear a pad and put on protective barrier cream to keep moisture under control. I also have a lot of spasms and very high pressure in my sphincter muscle due to scar tissue and me constantly trying to “hold” my leakage. I went to many colorectal surgeons in my area – university professors and teaching hospitals and also to Cleveland clinic for “ultimate” and last opinion on how to fix this. Basically I was told I have to learn to live with this as any surgery in this area will end up with colostomy bag. Remember, surgeons cut for living, talk to your GI about other options. Hope all turns out ok for you.
On the good note - found this on a diff. forum, looks very promising!
http://www.ncbi.nlm....les/PMC3226694/

#17 henryt

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Posted 26 April 2012 - 08:32 AM

Exit 4 - Thanks for sharing your story. I understand there is a relatively large risk when undertaking surgery. I am not going to rush into it.

I don't have IBD - and I am just finishing up my 2 weeks on Cypro and Flagyl. I am currently feeling ok. The fistula is draining, and I am taking sitz baths twice a day. I am getting my strength back, and I hope the diarrhea (from the Flagyl) goes away shortly. I'm planning to keep doing sitz baths twice each day - and see how I feel - and see how the fistula progresses going forward. I know it's rare for it to heal on it's own, so I'm just going to see how I do.

I also appreciate your advice about seeing a GI - that's smart.

#18 Napster

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Posted 26 April 2012 - 02:33 PM

Hi TFGB (and all) - I'm new, trying to find my way around this site, but I appreciated this question, as I'm tackling it myself. I have a jpouch, and a pouch-vaginal fistula (with at least 2 sinus tracts). I've had it about 16 months. I've been on various antibiotics, and am being treated at Cleveland Clinic. The doctor up there tried injecting doxycline 3 times into the interior hole, but it didn't work. He wants me to get a surgical consult, which I am doing next month, but IDK - yes, there's a little drainage at times, but really, I've learned to manage it. Oh, there's one biggie: marital relations are impossible.

I too am really nervous about having fistula surgery of any kind - there seems to be so few success stories out there, and if there are, they often come after multiple attempts. I wonder too about living with this for the rest of my life - the fear is whether things will get worse: more branches, abscesses, whatever. I'm open to discussions with a surgeron (or 2, or 3 ...), but my big fear is that things will be worse after fistula surgery than they are now.

Sorry, not really contributing much to the original question, except to say that I understand the anxiety of trying to make a decision on these matters. I will report back what the surgeon has to say next month. I've looked at the information on the VAAFT, and cry (not really!) that it's not available here. Seriously --- my husband and I would make the trip to India to have it done if they told me I were a positive candidate. I'm actually going to try to get a hold of the doctors over there via email and ask them for further information.

BTW - this is a WONDERFUL site, I've been looking for fistula support for quite some time and am so glad you're all here. I've only shared my fistula condition with my husband - who is very, very supportive, and well ... that's it, so it's just so great to meet you all and to hear of all your experiences and ask questions and get advice from people who've actually experienced this.

#19 ajl1239

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Posted 21 December 2012 - 08:16 PM

I have a .75 cm x .75 cm puss/bloody abscess (?) and then some more dense skin behind that puss -- is that likely the fistula track? Or is it just part of the abscess that has yet to turn into puss/blood?



#20 paul1234

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Posted 24 December 2012 - 10:10 AM

Read my post of JUST HAD FISTULA SURGERY.

Look, the abcess won't go away unless the fistula is gone and won't feed the abcess. The abcess for me was very painful. The only was out was the fistula surgery. That surgery was NOTHING. I did not have a seton,it was the type where they slice it open and let it heal. It is the most evasive type but the highest success rate 95% per my surgeon. But I felt nothing right after the surgery and felt 100% that day. It's been 3 weeks since the surgery - very light bleeding on days when I go overboard (Yesterday, I lifted weights - heavy for 1 hour, played 1-1/2 hours of golf and bagged 20 Hefty bags of wood chips from a stump that was ground down. Then I walked 1 mile this morning with a crazy new puppy. That is a lot of stuff for a 49 year old.

But my point, life is pretty normal 1 day after the surgery. You'll bleed and drain few weeks, but that is no problem since the pain is gone. And that terrible hard area I felt inside my BUTT cheek - (whick was the inside of the abcess) next to my anus is completely gone.

 

So surgery for me was the ONLY way out. Was I freaked out about a surgeon taking a scaple tomy BUTT? You bet -I was crying and scared for the 3 days prior to the surgery. If I had known the surgery was NO BIG DEAL- I would have spared myself a lot of anguish.

The most painful part was actually taking off the tape from the bandage on Day 1. BTW after you remove the bandage on Day 1, you don't need any more bandages. I used a square of toilet paper rolled up to catch any drainage for the fisrt 7 days then nothing at all. Just soak your butt for 15 minutes twice a day.







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