multiple setons?

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ivy6
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Date Joined Sep 2005
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   Posted 4/1/2008 6:15 PM (GMT -7)   
I have a horrible feeling that I'm developing another anal fistula, even though I'm on Humira mad . I'm being examined under anaesthetic next week, and I wouldn't be surprised if I woke up with new setons / tubes / other fun things.

I know there are a few people here with multiple setons. How do you live with so many? I can dodge one when I'm wiping myself after bms, but how can you get clean with several?

sad

Ivy.
Co-Moderator Crohn's Forum.


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 4/1/2008 7:36 PM (GMT -7)   
Hello Ivy6,

I have two setons. Just got my second one the end of January. I hope I am not starting a collection! I know others on this Forum have more than I. Maybe they will chime in.

When I got the abcess, I too thought it would end up being another fistula with another seton. I had similar apprehension! But I have been pleasantly surprised -- as much as one can be under the circumstances! -- that they aren't more trouble. I think it depends on how close the setons are to each other. Mine are very close. So cleaning two really isn't much more trouble than cleaning one. The same goes for wrapping gauze -- it goes in the same place but it just covers two. So please don't fret too much! You actually don't yet know that you will have another seton, so I suggest you put it out of your mind until you wake up from the procedure.

As to cleaning, if I am home, I jump in the shower and use the hand-held sprayer to blast the area clean. I find I have to do it again about 30 minutes after a BM because icky stuff drains out of the fistula. I apply Balmex to the area and then fold guaze around the setons so that their sharp ends don't dig into me. The Balmex keeps my skin protected from the rough guaze and the stuff (in my case, two setons does mean more stuff). At work, I keep a squirt bottle handy that I can use to blast out nasty stuff if I have a BM during the day.

I hope this helps. I purposely have adopted the attitude that my setons are my friends. Without them I would be in dire trouble. As long as they keep draining (versus clogging and abcessing), I am happy. Strange, but it helps me keep a positive attitute towards my seton friends.

One last point. Cleaning out the abcess (actually 2) left me with an open wound. I was using regular water to moisten the guage so it wouldn't stick to the wound. But I got an infection. My Mom suggested using saline because the salt will sterilze and help promote healing. It really worked! But I had to get the Dr to write a script so I could get saline cheap and in large quantities from the pharmacy.

Take care and please let me know how it goes!!

patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 4/1/2008 8:38 PM (GMT -7)   
I had two setons for about 8 months. One was a rubberband that went through my anus and out a tunnel about 2 inches from my anus on my right cheek. The other was just a regular tube-type seton, in about the same spot on my left cheek. It sucked, but you get used to it. I used gauze as well... it helped keep the area from getting chapped... and the cushioning kept them from jabbing me. I took lots of baths. Often I would just take my pants off and put my rear end under the tub faucet, dry off and re-dress. You'll get into a groove - it won't be fun - but it's so worth it when you get those stupid things healed up!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/2/2008 11:08 PM (GMT -7)   
patientspiders said:

"You'll get into a groove - it won't be fun - but it's so worth it when you get those stupid things healed up!"

:-O You mean they get better with time? I've had one for a year now, and it can still be quite painful at times.

Thanks for your advice. And fallcolours, you're perfectly right. I should stop worrying, shouldn't I? I wouldn't be so anxious if this were being done at home, but I have to go to a different city to have it done, and I'm worried about all the jiggling getting home again, not to mention staying clean.

There are times when I wish for a different, less icky disease!!!

I.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/3/2008 5:26 AM (GMT -7)   
Hi Ivy6,

I am still dealing with the anxiety of staying clean when I travel. I find the squirt bottle to be the answer for me. I carry a bag with the squirt bottle, guaze, a mirror (for setting guaze), balmex, and flushable wet wipes. I also found saline in spray cans in my local pharmacy. You can spray them upside-down, which means I can use them while sitting on the toilet. The cans are expensive -- 6 to 8 dollars (eeeek!) and you only get about 2 uses. But they work well for me so I keep a few with me when I travel. This travel bag has really eased my mental anxiety!

After my abces surgery, I was nearly frantic with worry about keeping the wound clean. I mean -- please -- think of what is down there! Poop, urine, etc., etc.! Oh yuck! And all in the wound regardless of how hard I tried to keep it clean. But then I realized that area is built to take this stuff. If I had an open wound on my arm and it had poop, urine, etc., in it, I think it would go gangrenous and fall off!!! The fact that our private area can withstand the "stuff" is God's grace to us. So I take comfort in that fact. I do the best I can and give the rest to God to take care of. Afteralll, he owns us and promised he would care for those who want to have a relationship with him.

I hope you find something that works well for you! Let us know how it goes!!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/3/2008 4:54 PM (GMT -7)   
What's balmex, Fallcolours?
Co-Moderator Crohn's Forum.


chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 4/3/2008 6:00 PM (GMT -7)   
FallColors...you made me giggle with your second paragraph...I so can relate. I remember asking my surgeon about it after one of my abscess drainages, and he told me to stop being so anal about it! :)

vid53
Regular Member


Date Joined Jan 2006
Total Posts : 117
   Posted 4/3/2008 8:03 PM (GMT -7)   
So when do you take out these setons? I have had mine for about 6 years.
 
Vid53

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/3/2008 8:23 PM (GMT -7)   
vid, I *still* think that's weird. They told me it was standard procedure to replace them every 12 months. I don't know why.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2008 5:11 AM (GMT -7)   
Chroniemomx2 -- That's funny! Was he trying to be funny?! My surgeon has a great sense of "potty" humor too. It must go with the territory.

You can keep setons forever, from what I have been told. I haven't heard they need to be replaced every year. Maybe that is to make sure they stay strong?? My Dr. did say they can break.

My setons aren't coming out without surgery. They are too high in the rectum for a fistulectomy (sp?) -- where they cut open the fistula and let it heal. I have too much sphincter muscle below the fistula and would be immediately incontinent. I have to wait for the disease to stop being so active before I can even consider the advancement flap surgery (which only has a 70-80% success rate in CD). :-( For me, keeping the seton or having the surgery will be a life-style choice.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/4/2008 3:48 PM (GMT -7)   
Fall, how big is the squirt bottle that you carry with you?

Mine goes *through* the sphincter muscle :-(.

I.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2008 4:54 PM (GMT -7)   
Hey Ivy6,

Mine is a 12 ounce spray bottle. The whole thing is 9 inches long. The bottle itself is 2 1/4 inches wide. The important part is that it has to have multiple spray settings/options -- for me it can't just mist, it has to spray in a single stream so I can blast the stuff out. The other tip is to fill it up to the rim so it will squirt when you hold it sideways or upsidedown.

I got mine at my local Rite Aid pharmacy store for a couple of dollars. It was in the beauty/hair isle. I just saw several when I went on Amazon and searched for "spray bottle".

My supply carrying bag is a black tote with a zipper on top. Like a professional work tote. Very stylish. I bought it at the Thrift Store. :-)

Your procedure is next week?? I hope you have a great weekend!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/4/2008 7:21 PM (GMT -7)   
So it's just a regular squirt bottle that you use for watering plants, moistening ironing, things like that?

Yes, the procedure is next week. And just to make it even more fun, I've discovered a lot of pus around my bottom. The odds of getting another seton increase by the day.

The tote bag sounds good. I have a toiletry bag that I carry with me when the Crohn's is getting bad, but a tote is a lot more discrete, isn't it?

I.
Co-Moderator Crohn's Forum.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2008 8:09 PM (GMT -7)   
Yes, just a regular squirt bottle.

Sorry to hear about the pus, but it sounds like it is draining. Which, of course, as we know all too well, is far better than abscessing!!

Get yourself a fashionable tote and no one will suspect the strangle supplies you have inside!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/4/2008 9:30 PM (GMT -7)   
Thanks, f/c!
Co-Moderator Crohn's Forum.


ginger71
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Date Joined Nov 2005
Total Posts : 722
   Posted 4/5/2008 6:52 AM (GMT -7)   
Ivy-maybe it will give you some hope to hear this....
 
I have 2 fistulas and my surgeon was able to put 1 seton through both so I don't have a bunch of rubberbands hanging around down there......It's really close to my skin too so it's not actually "hanging" like some of the other setons I've had. Maybe you can ask your surgeon about this. (Unless the fistulas are on opposite cheeks,then it might not work so well tongue )
 
Wishing you the best with your surgery. You'll be in my thoughts.... :-)
 
 
37 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (29 surgeries including abscess I & D, exploratory surgeries, 4 C-ton drains and 1 fistula plug) Have also had several self bursting abscesses.
1st Remicade infusion 6/5/07-still taking it.  Praying I'll get better soon so we can have a baby.
Ginger :)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/5/2008 7:10 AM (GMT -7)   
FallColors....Yes, he was being funny! He's great! I love him! My favorite dr.!

I have no plans right now of mine coming out either. He said that I can keep it forever or he can take it out and see if it will close on its own. Since I'm on remicade, I have a better chance that it will, but I'm still hesitant. Life is good right now. I haven't had any problems with it, and I certainly don't miss the numerous abscesses I was getting before the seton.

My surgeon is very conservative with his crohns patients. He doesn't like to cut unless absolutely necessary. Because I'm only 33, and I'll be living with this the rest of my life and the seton is not causing any problems, he doesn't recommend surgery for my fistula at this time. He thinks that the less we have to cut "down there" the better.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/5/2008 7:27 AM (GMT -7)   

Cool!  Sounds like you have a good Doc!  Mine said the exact same thing!

I myself was thinking that if I stayed on Remi or Humira for several years AND my Dr said my rectum looked good (what a concept!), I would take out the seton and pray.  Although my Dr said these peri-rectal fistulas never really totally heal without surgery.  But it is all for not because I've had 2 allergic reactions to Remi and one to Humira.  I am in the 1% who are allergic to Humira.  sad sad sad


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/5/2008 7:11 PM (GMT -7)   
Gosh, even if they did remove the seton and let the fistula "heal", I'd be scared it would reopen and I'd have to go through the surgery and sepsis again. I'd rather just keep it in, thankyouverymuch!

Thanks for the tip about running the setons together. Apparently the man doing it is an excellent surgeon and a colorectal specialist, so I hope he'll leave me with something more comfortable than a general surgeon would.

I.
Co-Moderator Crohn's Forum.


cosmicsnail
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 4/7/2008 11:46 AM (GMT -7)   
I have 3 fistulas and 2 setons. I got my first fistula 5 1/2 years ago and they've just escalated since then. Do you guys still get much pain with your setons in? My doctor seemed confused when I said I still have pain in my most recent fistula after having a seton placed in it last year. I only ever go a few days at a time without pain.
Crohn's Disease diagnosed 2003
Complex anal fistula since 2002
Resection 2004
Current meds: Azathioprine 150mg
Citalopram 40mg (depression)


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 4/7/2008 12:58 PM (GMT -7)   
ivy6 said...
vid, I *still* think that's weird. They told me it was standard procedure to replace them every 12 months. I don't know why.


because they get to bill for it! profit motive maybe?



anyway, i now have a new set of setons in addition to my original set....i looked in the mirror with some manueveuring after Thursday's new placement, and it sure looks like a cluster-_______ down there (excuse my expression).

I don't have to worry as much about the mess, since I have an ileostomy, and don't have any "poo" coming through the fistulas anymore.

I know it sounds awful, but i literally can't wait until the day these come out and I have nothing but the memory of a anus.........(i am having a total colectomy in the next few months, and will be closed off for good after the surgery....ahhhh....perhaps i may find relief after all...)

****************************

I edited out your swear word. Let's keep this family friendly, Glad-Bag nono - Ivy.

Post Edited By Moderator (ivy6) : 4/7/2008 3:18:30 PM (GMT-6)


Glad Bag
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Date Joined Mar 2007
Total Posts : 699
   Posted 4/7/2008 1:03 PM (GMT -7)   
cosmicsnail said...
I have 3 fistulas and 2 setons. I got my first fistula 5 1/2 years ago and they've just escalated since then. Do you guys still get much pain with your setons in? My doctor seemed confused when I said I still have pain in my most recent fistula after having a seton placed in it last year. I only ever go a few days at a time without pain.


i still get pain! in my opinion, don't try to guess if your doctor's "seems weird" in reaction to something you say or ask. Tell him it is the reality, and you need pain meds to deal with the fistulas. I did and I would be in hell without the vicodin.....and now, I even asked my primary for some Ativan, since I am tired of getting so upset about discomfort and inconvenience, caused by those ever persistent fistulas!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/7/2008 2:08 PM (GMT -7)   
Good, thank you. Mine still hurt, too, and the docs seem surprised about it. I'm glad I'm not alone.

I.
Co-Moderator Crohn's Forum.


ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 4/7/2008 5:30 PM (GMT -7)   
Add me to the list with sore setons. They stopped hurting for a while and it seems like when they are "filling up" they actually hurt more.
37 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (29 surgeries including abscess I & D, exploratory surgeries, 4 C-ton drains and 1 fistula plug) Have also had several self bursting abscesses.
1st Remicade infusion 6/5/07-still taking it.  Praying I'll get better soon so we can have a baby.
Ginger :)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/7/2008 5:56 PM (GMT -7)   
Yeah. Why don't the doctors know (or listen)? Serious question - surely, when enough patients report soreness, a pattern should emerge?

i.
Co-Moderator Crohn's Forum.

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