07-30-2012, 02:36 PM   #1
Join Date: Jul 2012
Location: Ohio

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Yet more seton questions!

I've had a pouch-vaginal (actually, just south of the vaginal opening, near the perineum) for about 7-8 weeks now. Have had the fistula since Dec. 2010.

Is it normal to have increased discharge and bleeding as well after activities such as gardening and fairly light exercises, including stooping, squatting, etc.? My surgeon told me I could go ahead and do all this, but I didn't think it would kick up the discharge/blood, and she didn't mention that would happen. I think the blood is more from the actual outside of the fistula - like it's a wound that just starts bleeding whenever there's any action down there.

Also, she said I could indeed have marital relations but I cannot imagine how this could be done with pain from having the seton pulled and tugged on, etc. (you know what I mean). Anybody experience a similar fistula/seton/issues?
07-30-2012, 03:28 PM   #2
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Avw's Avatar
Join Date: Jun 2012
Location: Lafayette, Louisiana

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I don't have the same location as yours but I have a long run with abscesses/fistulas/setons... And I do notice more drainage and bleeding after being active, even just little things. Unfortunately I don't have any advice to offer on the "relations" topic, been pretty much abstinent since I had my daughter who is almost 5! Not because of the abscess of course, but sex would absolutely be the LAST thing on my mind while dealing with this sort of pain and discomfort... but I'm sure you can find other ways to keep your hubby from going bonkers!

Best of luck and I hope you find some relief soon!
Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
07-30-2012, 04:07 PM   #3
TammyKathleen's Avatar
Join Date: Apr 2012
Location: Portland, Maine
Hi Napster,

I have experienced the same thing regarding the drainage. I don't know why it happens, but it seems very common. I would guess the blood may be something similar to what you think. For me, the setons really hurt sometimes, especially if one of the "knots" gets too close to the skin for too long.

I have been told the same about "relations" and I told my doctor she was CRAZY! I don't know how everything wouldn't get pulled out, yanked around and hurt like crazy!!

I have this strange fear based on something my mother told me years ago to scare the death out of me against pre-marital sex. She said sometimes people get "stuck" together (she was raised irish Catholic) and while I never believed her, all I need is to get surgically entwined with my fiance and prove her right, LOL! I can envision her wagging her finger at me now!
07-30-2012, 04:50 PM   #4
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Join Date: Oct 2010
Location: Coon Rapids, Minnesota

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Hi all,
I was able to have "relations" with a recto-vag seton. It took some getting used to and sometimes lube was needed but it was not too painful. Mostly it was fine and just felt strange when it "pulled" I think the seton are made to stretch some.

Tammy, that is super funny. We never got "stuck" in the seton. OW!

Be brave.

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)

Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
07-31-2012, 06:37 AM   #5
Join Date: Jul 2012
Location: Ohio

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The increase in drainage/bleeding thing sounds normal, I guess. I can't help but feel that it's a set-back when it occurs, though. Makes me feel like giving up on my exercising/squatting/etc.

Sailorluna, your experience is encouraging, thanks for sharing. Makes sense that the seton would have a little "give". My surgeon also said use lots and lots and lots of lubricant. Also, when the fistula first was found, my OBGYN told me not to have relations while it is draining. I can understand - I wouldn't want the gunk being pushed into places it doesn't belong (as well as into my husband ), but lately it's always draining, so, idk. Bottom line, I guess when things settle a bit more, we'll give 'er a whirl. Now, just have to get over the fear factor...

AVW, 5 years .... oh my, your husband is a saint! Mine is very, very understanding as well, but we were told this seton would be in 3-4 years (unless I choose surgery, which I am declining at least for now). Don't think either of us could handle 3-4 years...

TammyKathleen, you gave me my first good laugh of the day - thanks!
07-31-2012, 07:00 AM   #6
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Join Date: Jun 2012
Location: Lafayette, Louisiana

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Hahaha... No, no husband for me! One child to clean up after is plenty! Lol

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