AAAGH....I think I may be having a recurrence of the fistula...Are there any women among us who have had a repeat vaginal fistula after pouch removal????

Not at all sure where it would be coming from: the other was recto-vaginal, and I have no rectum, no colon, and only 12 ' of small bowel left - not much in there to cause problems. Nonetheless, I'm having vaginal discharge that continues to darken, burning, and today a slight bit of bright red bleeding. Help!! This looks just like the start of the last round. I also feel a little bit full at what would be the anal opening if I weren't a Barbie Butt. That feeling is fleeting, but I haven't had it since the week after my perm. ostomy surgery last July.

My primary care doc said to call the ob/gyn, and he is cramming his schedule to go on vacation. The earliest appt. is this coming Wednesday. I can call my primary back, but other than the patient, I've found no one thinks fistulas are an emergency since they can be so difficult to treat. I'll see my doc socially Sun and just check in...

Any other advice? Anyone else out there with experience?

Thanks in advance. I'll cross post to the short answer need advice now forum, too (brain dead and can't remember the name of it).

Barbara

Hi Barbara,

First of all try not to panic. (easy for me to say I know) You already know that this can't be stool that you are leaking.

As for the pressure you are feeling in your Barbie Butt, I still get that from time to time and it's now 4 1/2 years since I've had my j-pouch removed. When I first started getting it I was convinced that I had another abscess down there but I've had surgery since and no abscess was found. It's just the nerves playing games with my head, a bit like an amputee still having pain in his non-existant foot.

I never had a fistula, but had convinced myself that I had one for a while because I started getting this white milky stuff leaking into my vagina every once in a while. I thought it looked like the fluid that you get from a sterile abscess and there was lots of it. I had laser ablation about 20 years ago because of heavy bleeding caused by endometriosis and haven't had a period since so I couldn't imagine where else this could be coming from. Now I can pin point it to about once a month so I think it must be my normal cycle discharge.

I know how hard it is for you to wait to see your ob/gyn but Wednesday will soon come around and then you will know for sure what's going on. I will be keeping my fingers crossed that this is an easily fixed problem for you. In the meantime have yourself some nice warm relaxing baths and pamper yourself. I won't say try not to think about it because I know that's all I would be thinking about, but try not to worry too much. Post an update as soon as you can.

Luv & hugs

Shell

Barbara, I don't have any advice to offer, but I hope you find any quick, easy cure to your problem.

Anjuli

Thanks, Anjuli and Shell for your very encouraging words. I decided not to panic, and to treat this as though I have a vaginal infection - yeast. At first I didn't want to use the injectable cream because the the ob/gyn won't be able to see anything for the sea of cream in the way. But you're right, Shell, it just can't be stool (though my first fistula started just like this - clear, then translucent, then opaque, then the mess), so the logical thing is a vaginal infection. It itches infernally, so I am using the vaginal cream and I'll just keep the Wednesday appt and see what the ob thinks. I so appreciate the calming words.

Barbara

Any news Barb? I am on the edge of my seat wondering if your can get a fistula after perm. ostomy because peri-anal disease is my big problem and the reason for my ostomy. Hope you have found a solution to a surprisingly not so bad problem.

Yes, news, Marcene, and it's all GOOD! thanks for asking. The short answer to "can one have a fistula after perm. ostomy?" is yes, but it would be quite unusual. (Though most of us here specialize in "quite unusual." <g>

I don't have a fistula, but I have new internal architecture. Seems when I had my fistula repair and the j-removal with perm ostomy last July, surgeons needed something to which to attach the repairs. Knowing women are prone to dropped bladders and tipped or prolapsed uteruses (is that "uterii"?), they just put in a few more stitches and tucks and sucked every special part right up a bit higher. In so doing, a small reservoir resulted at the top of my vagina. I can just feel that at the top of what used to be a steady incline, there's a little drop off - kinda like the back side of the ski slope, grins. The reservoir is a golf-ball sized spot for fluids to hang out til they reach the tipping point, so that's why I had occasional gushing, and why I couldn't link the use of anti-yeast infection meds or estrace cream to the gushing - they're widely separated in time, sometimes 5 days.

The good thing is that I probably won't ever have drooping internal parts (why didn't they just hike up my cheeks a bit as well!!??). Being intimate may be odd (or maybe better, ya think??), but I'm working on that after a waaaay too long period of abstinence (Good thing I have a sainted husband).

Now, rather than use an estrogen cream for vaginal atrophy, I have an estrace ring, replaceable every 3 months. That's so the estrogen dose is controlled, rather than a fluid pooling when it should drain right away. Haven't tried it yet (had to wait for the yeast infection to clear), but it should be fine. Feels rather like a small diaphragm, except contrary to that appliance , this can be removed for comfort during intimacy (or not).

It's an unimaginable relief to know what's going on and that it's not a repeat of the fistula. I feel SO healthy, finally. Just returned from a week of camping and hiking under rather difficult circumstances and did just fine! See my post under "raves". I have my life back, am eating everything (including popcorn at Pixar last night) and working hard, loving that my life is finally more normal. Last year at this time I'd probably been hospitalized ten times since January, was so weak I couldn't walk 100' from the back door to the garden, and so grimly discouraged I had assembled the means to take my life if the perm. ostomy worked as badly as had my temp. loop. Hurrah! Light at the end of the loo tunnel, life at the beginning of an end ostomy. If you know of anyone who's hesitating with removal decisions or having a tough time managing a new ostomy, send 'em my way.

Barbara

Barbara your post has made my morning!

Perhaps my surgeon did the same thing when he removed my j-pouch because I get a similar gushing milky white discharge every now and then. I though it might have jue been that time of month (as I no longer have periods) but maybe what you described is standard practice when removing a j-pouch

Anyway, I am so glad that all is well in your world and you can now get on with enjoying the rest of your healthy life.

Luv & hugs

Shell

Well Barb, your post certainly made my day as well! I have my perm. ostomy due to chronic fistula problems and a recurrence after all this would be an absolute nightmare. It's good to hear that this is not the case for you!I can hardly wait until I feel well enough to hike and camp...so much to look forward to when the floods subside. I seriously just want to squeal with joy at your news.