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!!! =)
