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07-21-2008, 05:32 PM   #1
Cheerio
 
Anal Fistula Treatment

Firstly I'd like to say hello to everyone.

Has anybody had a fistula treated and had the seton left in?

My girlfriend has a fistula which the surgeon says can only be treated by having a drainage seton inserted and left in indefinately. Apparently this fistula is too far in to try and lay it open or cut it out with a seton.

What is it like to live with? Does it have to be dressed 24/7? How does it affect you going swimming etc?

Cheers in advance for your help.
07-22-2008, 01:10 PM   #2
Aenea01
 
The only one I had was treated with surgery but not left open. I'm not a huggy touchy-feely person but please give your gf an extra one for me for having to go through this.

Talk about a pain in the ass...
07-22-2008, 06:23 PM   #3
Rosemarie
Member
 
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Join Date: Feb 2007
I have had an open fistula for 3 1/2 years now (Since Feb. 2005). It has a small drain tube and ceton holding it open to prevent abcess formation. I've been told by Cleveland Clinic (Ohio) doctors that its one of the most complex fistulas they've seen so the cetons are staying in untill they have reason to believe it has healed well enough to close properly on its own without cetons/complication. This may or may not happen... I'm still healing slowly but surely 3 1/2 years later. Things are looking good but it's still not much different then it was 3 years ago... I've also had another one on the opposite side of my bottom- less severe so less healing time- but it DID HEAL and close on it's own with these hard learned tips:

1. take the meds you are prescribed to control the disease!!! Antibiodics like Flagyl will also help her heal nicely but they do come with side effects. I took Flagyl for 2 years and it DID make a difference but I took it in cycles so it wouldnt loose its effectivness and so I could get a break from the unpleasent taste and side effects. Taking it for a few weeks then stopping for a week (or whatever works best for HER is ok). If she feels an infection coming or is around sick people she should take it EVERYDAY or as prescribed regardless. ANY kind of infection (sinus or worse) will set back her fistula healing... Im assuming she has Fistulas Crohns disease (like me)... infections aggrevate fistula symptoms- drainage, inflammation, pain- the more you AVOID things that cause this the more time her body has to work on HEALING itself instead of fighting off whatever is exacerbating her fistula.

2. keep it CLEAN with sitz-baths. adding Dead Sea salt -you can order bags online- (she should do some research herself into the healing benefits of sea salt) helps it heal faster and discomfort of the scar tissue that will build up slowly around the opening. I usually add it to a few inches of hot water in the tub and just sit in it for 10 minutes a few times a week, or whenever I feel the need to use it.

3. go straight to colorectal docs if anything odd pops up so it can be treated immediatly! fistulas arent patient. they dont wait for anyone or anything before getting worse if something is wrong. I learned this the hard way. EVEN if her doctors arent giving her definate answers about what is wrong or telling her not to worry, if she is EVER in severe pain or KNOWS by instinct something is wrong, then get a second opinion if necessary! My first G.I. doc told me I had a normal "boil" on my butt right after I was diagnosed with Crohns. He told me to leave it alone and it would heal on its own.... needless to say I ended up almost dying from infection that had built up while the fistula was forming, in the worst pain of my life, and here I am years later still trying to get this thing to heal and go away! So she needs to know how important it is that she LISTENS to the subtle signs her body will give her if theres anything wrong with the fistula area. SHE knows her butt better then ANYONE ELSE! I keep a journal and write anything odd (including crohns symptoms or anything else at all). She will be able to see patterns this way- what helps and what dosent. And pinpoint exaclly when drainage was heavier or whatever she needs to know when the docs ask her at future appointments.

The biggest difference she will see as time goes on (if there are no major problems with it that will set back healing time) are slightly less drainage... but it comes and goes depending on symptom managment and freguency of bowel activity (keep in mind that it will ALWAYS drain something, even clear liquid in very small amounts, simply because its an opening from her bowels). I dont know all the details of the condition of her bottom, but if its just one open fistula like mine then she shouldnt need to keep it dressed 24.7. The only time mine was kept covered by hospital dressing was right after surgery while it was still new and bleeding a little. I found that ROLLS of thin, soft gauze are the best to use... tell her to unroll them and fold them into long squares that fit snuggly against her bottom. They are best held inplace by the stretchy underwear that they use at hositals, the kind that look like fishnet pantyhose. NOT sexy i know =) but this way works much better then trying to keep thin squares of cotton taped in place and covered by panties that wont hold them if the tape isnt sticky enough. With the rolled gauze theres no TAPE to pull off (or gummy stuff to scrub off her butt lol), no ruined panties when the little squares dont qork well enough if she bleeds, and the BEST thing about the rolled gauze- it forms an extra soft cushion covering the sensitive spot and keeps it from rubbing against the surrounding skin! She will be able to sit more comfortably with the extra cushion while its at its most sensitive (after surgery or procedures where she would NEED to keep it dressed afterwards). Some insurance companies will cover these things if she can get her doctor to give her a prescription- she needs to EXPLAIN why she wants this particular type of gauze or they will just give her the little squares and tape! If she cant get a prescription for a box of supplies (to be kept for whenever she may need to dress it) she should try a local medical supply store. They usually carry this stuff and shouldnt charge TOO much. Or you can look online I suppose.
I dont use dressing or gauze at all these days... I havent needed to since my last surgery (I think that was over a year ago- they will go in occasionally to change the cetons and check her progress... maybe remove the extra scar tissue if needed because it can hinder healing if its growing to fast). After a while she will be able to sit and everything normally (if its not really bothering her that day). It will always drain, like I said earlier, but its nothing that a panty liner or thin regular pad cant handle. It WILL continue to hurt a little occasionally.... I wish this wasnt true but I must be realistic here. She must know that SIMPLY because its there, its going to bother her occasionally even if its healing nicely. Especially when the inside starts to heal and push the ceton outwards- which it will do eventually though it does take a long time to get that far. She will learn the difference between serious pains and healing pains. Healing pains arent nearly as bad as "fistula forming" pains are thank goodness! Scar tissue will be hard to the touch and uncomfortable sometimes but its a necessary part of the healing process. Eventually the tube itself will fall out or will be removed by her docs when the time comes. The cetons will probly stay in untill the last minute... whenever its healed enough to finish on its own.
As far as swimming and other physical activity goes.... I have never let it keep me from swimming. The chlorine actually helps it a little. Its not like a period... you can swim just fine and its not going to drain some kind of dark stuff all in the pool. no one will even know she has a tube as long as its covered up! I can run and jump and hop just like everyone else =) ...the only thing I havent done is sit on a bicyle because the seat is uncomfortable. But each person is unique, she will learn over time what to avoid. But for the most part she should be able to do anything she wants once her bottom gets back to a more normal state. I'd give it a few months (or longer depending on how serious it is) of healing time simply because it will take some time for the initial discomfort of a new fistula to subside. Eventually it wont bother her nearly as much and she will be able to resume whatever activity she did before (that includes sexual activity incase either of you were wondering.... the docs never said anything to me about it either but my husband and I resumed our sex life 3 months after my cetons were first put in. at first she must be careful because its still senstive at that point because its so close to her vajayjay (haha I know vajayjay) ...but as it heals it becomes less and less an issue during sex). The two of you will quickly figure out what might hurt her and what dosent in that particular area.

I was told mine wouldnt heal either.... and here I am a few years later almost back to normal! My docs are considering taking the tube I still have out next month since I havent had any problems with it in over a year. But only time will tell whats going to happen.
I HOPE SHE FEELS BETTER SOON AND KEEPS A POSITIVE OUTLOOK!!! TELL HER NOT TO BELIEVE THAT IT WILL NEVER HEAL!!! ALL DOCS SAY THIS TO PATIENTS WITH BAD FISTULAS!!! She is not alone in this problem, and there have been lots of happy endings!!! =)
__________________
~Mrs. Rose~ was here... ...spreading love to Crohnnies all around the world! http://www.myspace.com/rosepeck

Last edited by Rosemarie; 07-22-2008 at 06:48 PM.
08-03-2008, 04:18 AM   #4
Cheerio
 
Thanks very much rosemarie, that's answered loads of our questions!!

At the moment there is still no diagnosis, the biopsies and colonoscopy came back clear. Although at this stage they are not ruling out Crohns.

What medication do you use to control infection?

Thanks again
08-05-2008, 06:55 PM   #5
ErinDF
Senior Member
 
Join Date: Aug 2008
Hi Cheerio,

I also currently have a seton for a fistula. When things have gone wrong, I've taken both cipro and flagyl. Both at least do something for fistula. I will second everything Rosemarie said and just add this, she should do whatever she is comfortable with (when I first got it, I couldn't walk to much because of the discomfort but that is passed). Also, she should REALLY try to keep it as clean and dry as possible (sitz baths and sterile gauze to pat it down). I didn't do this well and got such severe skin issues that I had to be admitted to the hospital. I wish they had warned me.

Also...I don't think fistula definitively means Crohn's disease. I think some people just get them spontaneously. (THough don't quote me one that).

Erin
08-05-2008, 09:19 PM   #6
Rosemarie
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Join Date: Feb 2007
Your welcome... anything I can do to help, I will =)
I cant really give you any definite opinion on whether she has Crohn's or not. With fistulas its always a possibility, but proper diagnosis is best left up to the doctors. Just keep in mind what I said about seeking a second opinion if your not happy with the current doc. Most Crohn's patients go through 3 or 4 doctors in the first year before they find one that they trust and feel comfortable with. Please tell her I wish her luck... I hope she comes through this without a diagnosis of chronic disease!
I've taken flagyl and cipro to ward off infection (and it supposedly helps with healing, though the true effects take a long time to be really noticable). Right now I'm only taking Humira injections once every 2 weeks because I'm pregnant. By the way- IF she gets preggers reassure her everything will be ok =) I'm 21 weeks now and everything is going smoothly. The only thing Im doing differently is having a schduled c-section to avoid doing more damage to my rectum area. The humira has actually done WONDERS for me. Before I started taking it I was on Remicade and my Crohns symptoms were a little better, but it did nothing for the fistula. I still had small abscesses forming almost every month... when I started Humira all that stopped. Its been healing faster then ever and I think its mostly do to Humira (and having good habits of course- medicine wont work miracles unless you take it on top of doing the other things I've already advised... and anything else that works for her individually). But now that I think of it, I dont know if they will give her Humira unless she gets a definate diagnosis of Crohn's. Only time will tell I suppose. Keep us updated!
03-25-2011, 06:51 PM   #7
hope4
 
Join Date: Mar 2011
Location: San Diego, California
I too have a fistula and no one is telling me if it can ever come out. 7 months now with a draining seton, and healing is there, I see less drainage, but how do we know when it's time to remove the seton?

And if it is removed how does it heal from within the rectum?

I don't even want to think of surgery because I am suppose to have Crohns in my rectum. That can cause healing issues I know. I just want it to heal and have the seton removed. I know it can take time. But when do we know it's time?

Thanks
08-09-2011, 10:35 PM   #8
Red
New Member
 
Join Date: Aug 2011
Location: Roslyn, New York
I have had ceton 1 and ceton 2 for 3 and 1 year respectively
They require no maintenance
They are physically non existent except when you shower or have sex
They feel like 2 twist ties protruding from your rectal area
08-10-2011, 07:28 AM   #9
sawdust
Moderator
 
Join Date: Dec 2010
Location: Pennsylvania

My Support Groups:
I have had ceton 1 and ceton 2 for 3 and 1 year respectively
They require no maintenance
They are physically non existent except when you shower or have sex
They feel like 2 twist ties protruding from your rectal area
I would give your surgeon or your GI a call and discuss it with them. From what I understand, every case is different and depends on many factors. Do you have IBD, Red?
08-11-2011, 09:38 AM   #10
RFarmer
Senior Member
 
Join Date: Apr 2011
Location: Tennessee
Hello people! Seton removal is tricky. You need to make sure the fistula is fully healed, and won't close when you take the seton out. This can take a while, depending on your medication regimen. Some medicines slow healing, some speed it up.

Once the seton comes out, you have a couple options for taking care of fistulas. With Crohn's, they generally don't heal without intervention. Most intervention involves non-cutting procedures, like implanting a plug, or covering the inner opening.
07-29-2016, 12:06 PM   #11
sandieknox
 
Join Date: Jul 2016
Location: Lafayette, Louisiana
My 12 year old son was recently diagnosed with Crohn's by a GI but the diagnosis really surprised us. Our son developed an abscess last July 2015 right after vacationing in Dominican Republic and it was lanced twice before a surgeon chose to put him under to clean out the now huge abscess. He had to be put under three days in a row to have it properly cleaned, irrigated and packed. No fistulas were found at this time. He stayed in the hospital for almost a week and then we were sent home with home health to continue packing the wound. I eventually started packing it so that he could return to school. We began seeing a colon rectal specialist for check-ups when the area was not fulling healing and in December 2015 decided to surgical clean the area and recheck for fistulas...this time a fistula was discovered and a fistulatomy was done. The fistulatomy area healed but the abscess was still there and still draining, so in April 2016 the we repeated the surgery and another fistula or a remaining branch of the original fistula was found but it is too high up so a seton was put in. In June 2016 the seton was replaced with a new seton and a biopsy was taken to rule out Crohn's. The results came back inconclusive. We have since seen a GI and she says that our son has Crohn's but the colon specialist is not convinced. The scope showed very little and there was no blood in his stool. Our son has never had any symptom's of Crohn's except this fistula. I think it could be bacterial and want to try antibiotics first before getting on Remicade. Diabetes runs on both sides of our families so maybe that's why he is healing so slow? Can anyone relate??
Thanks!!
Jack's mom
07-30-2016, 01:50 AM   #12
hope4
 
Join Date: Mar 2011
Location: San Diego, California
Hi Jacks mom,

I am so sorry to hear about your son. It breaks my heart to know what he has been going through at such a young age. I have been through one abscess and one fistula and it was hell. I hope and pray for his healing. Personally, from experience, I believe your son's slow healing is due to his diet. I had to change my diet to stop from getting more abscesses and more fistulas. SUGAR and Simple carbs are the culprit (monosaccharides). These single sugar foods can cause inflammation of the colon and/or rectum, which in term causes diarrhea and/or constipation which aggravates the fistula, and in turn causes branching off of new abscesses and fistulas.

If you haven't changed his diet, you may want to try it. It would be worth it to try if it mean that he didn't have to deal with another abscess and fistula again.

I began the SCDiet and two years later the seton fell out and I was good. The fistula track is still there (it was a deep track) but it is not infected. It's just a piercing. And I am healed up nicely. No pain. No discomfort. I hated that seton!

BUT if I eat SUGAR (i.e. a candy bar 2x in a week) I will noticed a deep small dull pain somewhere deep and near the internal fistula opening. I have learned that it is inflammation, and the small beginning of another abscess. I always have metronidazole on hand, and I take it for 10 days. I hate it, but it works. This only happens about 1 to 2 times a year because I mess up and eat SUGAR. But taking antibiotics like that 2 x a year is not good. So, as long as I eat right ( don't over eat carbs, eat SCDiet and don't eat sugary desserts (cake, cookies, candy, etc) I am good. It's as though the fistulas doesn't really exists. Many people on the SCDiet can tell you it works.

I just hope you know that doctors won't tell you this unless they are very smart humble doctors that believe in something other than "drugs". I have a GI doc here in San Diego who even told me that SCD worked for many of his patients. If you have any questions, don't hesitate to ask. I want your son to be healed like me, but even more so.

Hope4
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