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Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 7/16/2009 11:00 AM (GMT -7)   
Just had surgery for one of my fistulas yesterday and I can honestly say it's not tickling right now, I think because my GP fobbed me off for almost a year it's much worse that it could have been. I now have a seton, and there is sphicter involvement, and they haven't even dealt with the second one yet!
For a year the GP surgery (3 seperate docs) just told me to put nappy cream on them to help them heal despite raised lymph nodes and discharge.
Why are docs that don't know what they are talking about so reluctant to refer you to someone that does.
Add to that being told that I had IBS and haemorrhoids for the best part of 10 years.....argh, I'd love to change surgerys but they even make that as difficult as possible.
Sorry, just needed to vent.
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. Awaiting surgery for 2 fistulas. (Doc unsure if it's Crohn's)
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, 30mg pred (tapering over one month)
Probiotics, zinc supplements, Cod liver oil.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/16/2009 11:03 AM (GMT -7)   
Vent away Sore Tum, thats what we are here for. Who else could understand the misery this dd causes. Hope things improve for you soon.

Big Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and 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, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 7/16/2009 11:32 AM (GMT -7)   
Oh Sore Tum that is so frustrating! Even with setons, my fistulae occassionally get a little infected. I'm on Levaquin right now for that reason. I think the poop that drains through the fistula just casues infection if it doesn't move through fast enough. That's may theory anyway. My doc says many Crohnies with fistulas stay on an antibiotic for this reason.

Raised lymph nodes means infection. Are you on antibiotics? I must say that I was in terrible shape until I got the setons. I was just one big ball of infection! But now things are so much more manageble, even with the occassional minor infection. So please take heart!

I also have too much sphincter involvement for a fistulectomy. What can they do for you other fistula?

Take care!
Diagnosed with 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.


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 7/17/2009 1:07 AM (GMT -7)   
My lymph nodes have been up and down for almost a year now, and I was never offered antibiotics, until the last episode when I requested them.
FallColors, how long have you had the setons in?
I think I've had seton fistulectomy, at least that's what the form says, the surgeon didn't speak to me after the proceedure so I don't know why they didn't tackle the other fistula, or how much sphincter involvement there was, however I know there was some.
I'm attempting to get hold of him by phone today so that I can clarify things.
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. Awaiting surgery for 2 fistulas. (Doc unsure if it's Crohn's)
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, 30mg pred (tapering over one month)
Probiotics, zinc supplements, Cod liver oil.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 7/17/2009 10:31 AM (GMT -7)   

Hi Sore Tum,

I've had the setons in for over a year.  The doctor called it a Stage 1 fistulectomy.  He explained that setons keep the fistula open, which allows "stuff" to drain out and not get trapped and abscess.  With things draining, and usually with antibiotics, any infected tissue around the fistula and old abscess can heal.  The next stage of the fistulectomy procedure is when they cut open teh fistula. This distroys the fistula tube and then it can heal like normal tissue.  They don't sew it closed, rather it is allowed to heal from the inside out.  If they sitch it closed, bacteria usually gets in and then -- abscess!!!  skull

But if the origin/start of the fistula is high in the rectum, then cutting the fistula open would require cutting through sphincter muscle.  You would be immediately be incontinent because the sphincter muscle will never heal properly.  That is the case with mine -- too much "sphincter involvement." 

There are two other procedures my colorectal surgeon said were options for me.  The first is the fistula plug, where they thread a wick-like string through the fistula.  Your tissue grows into the wick and so the fistula closes.  This procedure is successful only about 60-70% in non-Crohn's people and only 40-50% in Crohn's (we just don't heal as well).  The other option for me is the Advancement Flap Procedure, where they cut a flap of tissue right beside the fistula opening, fold it over the opening, and stick it closed.  Success rate is 80-90% in non-CD and only 60-70% in CD.   sad

Here are two good websites that provide information about fistulae:

http://emedicine.medscape.com/article/190234-overview     --- this continues on several pages, so be sure to click on the sections, especially "Treatment"

http://www.fascrs.org/patients/conditions/anal_abscess_fistula/

I am in no hurry to try either the plug or flap procedures.  I really, really hate abscesses.   shakehead   Right now I'd rather live with my setons then risk an abscess.  My doc says there is no medical reason to get rid of the fistulae -- I could live the rest of my life with them.  He said I can always change my mind later.
 
I suggest you search previous threads about living with setons.  Lots of great advice from experienced people on caring with skin irritation, cushioning setons, and cleaning them -- oh and the color of setons.  I've had blue, and white ones, and now have a very fashionable red.  yeah   I got a hand-held shower sprayer and use that to clean them.  I put one foot in the bathtub and the other foot outside and then sit down and spray away!  Then I wrap them with clean soft 4x4" guaze pads.  They guaze catches the little bit of drainage and keeps the sharp knots of the setons from poking me.  I find life is not bad at all with setons.
 
Take care!
Diagnosed with 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.


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 7/18/2009 2:46 AM (GMT -7)   
Thank you, I was given no real post op instructions and as yet still don't know what their plan is (I will chase again on Monday).
This has been very helpful, I have to say that if it hadn't been for this forum I would have been almost completely in the dark with alot of the worries I've had. It's provided me with alot of reassurance. Thanks again. x
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (Doc unsure if it's Crohn's).
2 fistulas, 1st op july 2009, now the proud owner of a seton, ?awating sugery for 2nd fistula.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, Probiotics, zinc supplements, Cod liver oil.
Past meds: prednisolone, colifoam ememas.


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 7/18/2009 2:47 AM (GMT -7)   
oh, and it's red!
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009. (Doc unsure if it's Crohn's).
2 fistulas, 1st op july 2009, now the proud owner of a seton, ?awating sugery for 2nd fistula.
Currently taking, 1200mg asacol TDS, 1g Pentasa supp at night, Probiotics, zinc supplements, Cod liver oil.
Past meds: prednisolone, colifoam ememas.

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