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I had my jpouch removed 2+ yrs ago, due to many issues, including a pouch/vaginal-opening fistula, and another perianal abscess/fistula. I’m closed up with Barbie Butt except a small opening that was left for drainage (which I believe is closed now), and which didn’t drain a whole lot to begin with.

Since my surgeries, I’ve had a bit of trouble fully emptying my bladder, but figured I could live with that. However, for the past few months, I’ve been experiencing a more disturbing symptom, in that I have some sort of leaks (or more descriptive – “squirts”) from somewhere “down there”. This almost always happens while sitting, or while emptying my ostomy bag. Not an every day thing, it happens approximately weekly – I’ll have a few days to a week where it does not happen. I don’t think it’s urine, it has no odor, and seems darker than urine. Very thin and watery. I wear pantiliners, so it’s usually caught in the pad. Sorry for the unpleasant description, but that’s pretty much it!

Some of my thoughts are fistula (please no), or nerve damage from the surgeries. I have an appt with a urogynecologist, but not ‘til August. I’m just asking if anyone has any insight or experience with such an annoyance?

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At this point, I would call the urogynecologist daily for cancellations and try to get seen ASAP. Sometimes calling daily around 10am works for grabbing a appointment in my experience. Try calling at least once in the morning and once right before they close. Hope this works honey, keep us updated

FM

Thanks for sharing, katenet.  I was able to see the PA who did a few tests and thinks I may have a small fistula.  Will probably be doing some imaging to see what we can see.  I was given some pelvic floor exercises for the urinary thing, but it's not certain what's going on there.  I'll keep you posted if/when anything else comes up.   

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Well, my urogynecologist "didn't feel comfortable" with the results of my MRI which was not exactly clear, so she sent me to see a colorectal surgeon (who, along with another CR doc there, created my jpouch in '93 - talk about full-circle).  After spending oh, $5000 or so on ultrasounds, MRIs, office appts., other testing, he did a quick $40 co-pay exam, and knew immediately what the issue was:

"the patient has a chronic fluid collection in the deep pelvis just posterior to the vagina and a little to the right of the midline. This is easily palpable through her vaginal exam. Periodically it discharges its contents probably from the midline sinus in the region of her old incision just behind the introitus.

I gave the patient 2 options. If this does not bother her much it can be left alone but it will probably continue to seep periodically as it has been doing so far. The other option would be to examine her under anesthesia and see if we can drain this collection either transvaginally or transperineally which will entail a drainage catheter placement and some dressing changes and slowly things might heal. There are no guarantees of course. If we leave it alone and it gets infected then we will most certainly have to drain it but the chances of that happening are not very high given that its 3 years from her surgery. She wanted some time to think about her options which is perfectly okay."

So there ya have it.  The sporadic leakage is a result of my surgery(ies), and the dr. thought it would continue forever unless drained/healed - and as noted, there are no guarantees there, either.  I'm torn as to what to do, but for now, I'm doing nothing, as I've been feeling so much better with the jpouch/fistulas/abscesses gone, and enjoying not having medical issues.  On the bladder/urinary issue, I'm currently resigned to living with it as it is, but things could be worse.   

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