Help! My seton has just fallen out. What should I do???

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ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 7:42 PM (GMT -7)   
The doctors here don't like to leave setons "in" for more than 6-12 months, so I've just been through the ordeal of the 600km round trip / general anaesthetic / surgery to have it changed, and now, two or three weeks later, the new seton is gone. cry

What should I do? It's a four-day weekend here, so can't phone a doctor until Tuesday at the earliest. All I can think of is:
a. phoning the big city hospital and asking to speak with the surgical registrar or
b. phoning the emergency department at the hospital here.

Is this an emergency thing that needs seeing to asap, or can I leave it until Tuesday?

*sob* I can't believe I went to all that trouble and expense to have the procedure, only to have it fall out...

Ivy cry
Co-Moderator Crohn's Forum.


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 4/9/2009 7:53 PM (GMT -7)   
Oh no Ivy! I have no experience with seton's unfortunately. Isn't it amazing how these types of things always happen before long weekends? Why don't you phone the local ER and go from there...
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.
 
Go Saskatchewan Roughriders!


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 7:54 PM (GMT -7)   
*sob* Thanks, Rider. I suspect you're right.

{insert multiple expletives} This is so not fair...

Ivy.
Co-Moderator Crohn's Forum.


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 8:17 PM (GMT -7)   
OK, I've just done the ring-around (from the hospital to Nurse On Call to the doctor on duty) and the official word is that this isn't an urgent situation yet, but I have to sit tight and watch for signs of infection, and if *that* happens I'll probably have to go on antibiotics and then back down to the city for another surgical consult + operation.

*Bangs head against desk*. I've had a horrible week; this is just the icing on the cake.

Ivy.
Co-Moderator Crohn's Forum.


Trigirl
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Date Joined Jan 2006
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   Posted 4/9/2009 8:22 PM (GMT -7)   
That is the worst thing I have heard all day!! I hope the weekend is OK for you I feel so sorry you have to suffer through this.

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 8:29 PM (GMT -7)   
Thanks, Trigirl.

:-(
Co-Moderator Crohn's Forum.


SydneyJo
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Date Joined Mar 2006
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   Posted 4/9/2009 9:07 PM (GMT -7)   
(((IVY))) Did the hospital say how to stop the area becoming infected? Will you be able to see them after the long weekend?This is so unfair, Im sorry you have to spend Easter like this.
Jo

ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 9:11 PM (GMT -7)   
It really does beat all, doesn't it, Jo. As if all the screw-ups while I was an inpatient there weren't enough, I now have to go through all that AGAIN.

Nope, no way to stop the infection (they said); I just have to wait and see...

I am so totally annoyed; I was planning to have a very holy and thoughtful Good Friday lunch, but now I am going to eat my fish with a happy video to try to lift myself out of this funk.

Grrrr. I wonder if they got a baby registrar to do it, and I was his very first patient...

Ivy.
Co-Moderator Crohn's Forum.


SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 4/9/2009 9:20 PM (GMT -7)   
You're right, you probably did get some newbie for your surgery after having this and all the other trauma happen. So now you just have to 'sit tight' and wait for infection!!! Sheesh!!! Not fair!!!
Please just rest up and enjoy your lunch and video.
Take care
Jo

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 9:37 PM (GMT -7)   
I think I might found a new organisation, Jo, called the Royal Society for the Protection of Patients from Bogan Doctors (RSPPBD). Want to join?

Feel free to rename. I could do with some funny acronyms.

Ivy.
Co-Moderator Crohn's Forum.


andorable
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Date Joined Jun 2005
Total Posts : 981
   Posted 4/9/2009 11:45 PM (GMT -7)   
So Sorry to hear that Ivy!. Hope u get sorted soon and u dont get an infection. Just what u dont need. take care (((((hugs)))))

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/9/2009 11:56 PM (GMT -7)   
Thanks, Andorable. It's already starting to feel sorer, so I don't feel too hopeful. Besides, the fistula has cut through the sphincter muscle, so the fistula always oozes pooey stuff (sorry, TMI, I know). How can it *not* get infected?
Co-Moderator Crohn's Forum.


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/10/2009 12:21 AM (GMT -7)   
Ivy....oh my goodness....how awful :( I don't know exactly where you are located...US or OUS...but I when I worked in the hospital...we had barrier creams that we could use to help keep stool out of wounds...I have no idea where you can purchase it emergently. We used a few other measures for bed bound inpatients that wouldn't be very practical...I will keep brainstorming.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2009 2:57 AM (GMT -7)   
Thanks, MM, but I think that would be unlikely to work. The mess that is likely to infect the wound is coming from inside me, so I doubt any ointment I apply on the outside will help.

Thanks for the thought, though.

Ivy.
Co-Moderator Crohn's Forum.


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 4/10/2009 3:52 AM (GMT -7)   
Hello Ivy!

What a nighmare!! I asked my surgeon about what to do if one or both of my setons came out. He said it wasn't critcal, but to call his office and he would schedule the procedure within a week or so. No need to see him first and then schedule the procedure, just schedule it. He said it would take time for an infection to really get going, which makes sense. He said its not like I would get an instant abscess. That was reassuring! But he did say he would want to place another one soon so to not wait to call.

Hopefully the soreness you are feeling is from how it actually came out. It must feel weird and even disturbing to not have one. I certainly want to get rid of mine and long for the day when I won't have them, but I certainly want them removed in a controlled way and by the doctor. If you feel an infection coming on, I wouldn't hesitate to get on cipro and/or flagyl to keep it under control until you get a new seton.

Try to relax and enjoy your temporary freedom!! Prance around, dance a jig, and sing happy songs!! For soon you will have to live with your "friend and very close companion" again!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2009 4:57 AM (GMT -7)   
That's fine, f/c, but remember that I'm 300km away from the hospital. I'm guessing this is going to need several 600km round-trips: first for the initial appointment, then for the procedure itself, then for the review appointment... all of that takes time, and energy, and money... and I don't have anything to spare at the moment.

When the time comes, I'll probably be able to deal with it... but right now, tonight, I am totally worn out, wrung out and fed up. It has been such a hard week; this is the proverbial straw that may break the camel's back.

Ivy.
Co-Moderator Crohn's Forum.


dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 4/10/2009 5:54 AM (GMT -7)   
I had a seton fall out once. Thankfully I was scheduled for surgery three days later but I did call the docotor on call and freak out to him. He told me that I should be fine for three days. I think you could wait, but if you are really worried isnt there a doctor on call at your hospital that you could talk to just to make sure and recieve some relief.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/10/2009 7:29 AM (GMT -7)   
Ivy forgive me my ignorance as I have never experienced a fistula or seton. But was wondering if during the next few days if you could use a squirt bottle or something a few times a day to keep the area clean? Sitz bathes? Just was thinking there has to be some way to try to keep the area clean. Sending (((BIG HUGS))) and healing thoughts and prayers your way.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

dunny2
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Date Joined Jan 2007
Total Posts : 3200
   Posted 4/10/2009 8:01 AM (GMT -7)   
You poor thing!!! ((((HUGS)))
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/10/2009 9:05 AM (GMT -7)   
Hey Ivy - just a thought with regard to this temporary freedom... I had to have my seton removed for the Prochymal trial. That was 18 months ago. I went with no trouble not having a seton. (I know it's still open as I feel it.) The fistula, from what I can tell, did not get worse, nor did it close up. I think that dance of freedom might be a good thing. Though, it's NO fun having to get one put in, so I am so very sorry that you went through all that for nothing!!!

When they took my seton out I was terrified it would mean a second surgery to replace it. Turns out I never needed it as I never got infected and it drained fine on its own.

Sadly, I think I have a fistula/abscess brewing elsewhere as these daily low-grade temps. I do not look forward to that surgery and seton placement. My thoughts go out to you!!! Hang in there!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  SLIPPING big time.  Started Cimzia first dose 2/10/09.  cipro/flagyl cocktail 3/25/09  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 4/10/2009 3:45 PM (GMT -7)   
How are you feeling today, Ivy?
I had to laugh at the 'bogan' doctors.
Can only think of one for your situation -
Society Towards Outlawing Obvious Lax Standards - we'll call it - STOOLS - for short.
My situation - Real Earnest Sane Person Expecting Civil Treatment - RESPECT - which I may never get from NASTY Gastro!
Hope you are in better spirits today.
Jo

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2009 4:11 PM (GMT -7)   
STOOLS!!!! I love it!! LOL, LOL. And RESPECT, too!! Today's Gold Logie for Comedy goes to *drumroll* SydneyJo!

Thanks for that :-)

Thanks for listening to my little (big?) moan last night. I'm not actually bummed about the seton, more upset because I have *so* much on my plate at the moment, and don't really have room in my life for another medical issue this month. I have other medical things coming up, and am not even sure where I could squeeze in a trip to the city and / or a day in hospital, so this has come at a bad time.

Worse, a fabulous month-long workshop is about to be held in our community. It's a fabulous opportunity and I'm longing to join in, but they can only take a select few people and they've told me to only enrol if I am *sure* I can stay out of hospital for the whole month, as it would be really unfair for me to take up a space and then drop out. I think this is what I'm most disappointed about, as it is so hard to find enriching and *do-able* social opportunities in our small community, and this one would have been ideal :-(.

Thanks again. And Shari, maybe you're right; maybe it will just heal by itself and not need surgical intervention. Wouldn't *that* be nice?

Ivy.
Co-Moderator Crohn's Forum.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 4/10/2009 4:24 PM (GMT -7)   
I know what you mean about the time it takes for all the tests/surgery/treatment we have and trying to fit that in with everday life - and I only live 15mins away from my hospital. It really is the inconvience factor and how it disrupts the 'normal' things in life that we attempt to do.
I have promised the kids to take them to the Royal Easter Show this year - Easter Monday, as we have'nt been for three years - will have to stay on this high dose of pred just to get through that.
Hopefully there will be other workshops you can attend in the near future - although it is very disappointing missing out this way.
And you dont nearly moan as much as you should Ivy!
Jo

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2009 4:33 PM (GMT -7)   
There won't be anything like this for at least another year, Jo, and only then if we're lucky. They were bringing someone on from the city to run it.

I was looking forward to some sensible, meaningful discussions. 80% of the conversation in my community seems to be old-lady personal gossip, which I don't do, and dislike. Believe it or not, I don't actually *care* what Millie said to Gertrude while they were arranging the church flowers last week... *rolls eyes* (that's exaggerating a bit, but I think you'll know what I mean).

Ivy.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/10/2009 4:52 PM (GMT -7)   
ps. I hope you can get through the Show without too much trauma, Jo.
Co-Moderator Crohn's Forum.

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