lizz move up the EUA. you don't want things getting worse or an infection spreading. seriously.. this is your health. you can take the GRE later. I've contacted you on your other forum. let me know when you are there. I will continue to be a frequent visitor in the next several months. Would definitely like to meet you.
liz

I agree. Also, I live in Cleveland, let me know if there's anything I can do, even if you just want a visit from another poucher at the Clinic. That's where I had my surgery done, back in 1995 in the good old Crile building.

Thanks, guys Would be awesome to meet you both! Jpouchers are so dang nice!
So, the discharge doesn't happen all the time. Maybe once a day and it's usually clear. Warning: graphic description follows: Last night, I couldn't tell if a little stool from my anal area got on the vag goo (since it's diarrhea 90% of the time) or what. I'll continue to watch it and if the goo continues, I'll move the surgery up. But, how do you differentiate between fistula goo and normal vag goo when there's no poo? (Omg that sounded like a weirder-than-usual Dr. Seuss riddle.) I don't notice an odor from the goo. All my research has said "foul smelling discharge/gas." Dr. Shen didn't seem too concerned by the MRI, so I guess I wasn't either. Ah, denial...
Have you guys dealt with a fistula before? I am just wondering if I need to be taking antibiotics in the meantime/what symptoms I need to look out for. The science experiment that is my body continues. It's nice to know I'm not alone, so THANK YOU so much for the kind words and support.

you could stuff a tampon up there for awhile. then you would know.
seriously.. do you really think you should wait.. i'm just saying.. you don't want things getting worse. and you also don't want to go in there in an emergency situation. trust me.. Just had to do it.

Rather than mess up your plans right away, I'd call or email Dr. Shen and see if he thinks antibiotics are a good idea while you wait for your EUA, or if he thinks you should have the procedure sooner. The main thing is to keep the drainage through the fistula at a minimum. This can be accomplished by thickening the stool, and antibiotics can be a good choice. You don't want this getting worse, for sure.

Generally, it is OK to continue sexual relations. Just nothing too vigorous or "adventurous."

Can you tell where in the vagina this is? The lower it is, the less likely it is to cause infections. Putting a tampon in can give you an idea where it is based on where spotting occurs on the tampon.

Jan

I've been in communication w/ Shen and he did not seem overly concerned about the fistula based on the MRI. He referred me to Remzi about two weeks ago b/c I was having air passage. He Rx'd some antibiotics because it feels like I'm having a flare. I will start those this week. Whether that is related to the fistula or not was not discussed. Overall, I feel okay. I have some pelvic pain (I typically have this), incontinence (happens during flare/pouchitis), but energy levels are decent. Antibiotics are a sure way for me to achieve thicker stool/overall improvement, and since the procedure is a month away and I have a TON of other pretty big life things going on, I don't want to rush in there unless it's absolutely necessary. As I said, I can't really tell if I'm passing stool-just larger amounts of occasional clear discharge, which is not uncommon for me pre-fistula. No abscess was found during MRI. I just am not sure what is cause for alarm and do want to remain vigilant, and since this is my first dealing with fistula, I was curious about what others' experiences were re: symptoms/treatment.

See with my fistula they thought it was a cyst and I was seen too late and dr remzi didn't get to control it.
My fistula started as a big almost big pimple boil looking thing and kept getting bigger and hurt more and more. One day I was just laying in my bed and it burst best feeling ever! But then the pain was there still and discharge. Went in and it became an abscess so he put a mushroom drain in. Had that for about 3 weeks and was on cipro/flagyl. Then he placed a cutting seton and cut some of the fistula and it was painful. I was told I would be miserable for 3 weeks straight and they weren't kidding. I had that for from nov 6 to early January. Then he placed another one Bc it still needed it, thh fell out and then I had some complications it wasn't healing like it should. And had another EUA end of January was told I had a sinus tract and then had a pouchscopy done 2 weeks later dr Shen injected me with glucose and 2 weeks later still have the fistula have a lot of pain and was admitted b of it had another EUA and was determined the pain came from the glucose shot, and now just wanted this thig to heal. So PLEASE get it done as soon as possible!!! Don't wait. Ask me anything I will tell you what I've been thru what to expect whole 9 yards

Nothing to add, no experience with this (though I've probably just jinxed myself...) but just wanted to say that I'm sorry for those of you dealing with this. I hope things resolve for you, as easily as possible.

Thanks, all. I probably am just going to move the EUA up. Better than letting it get worse/worrying about it.
For those who have dealt with this. What did the vaginal drainage look like? Mine has only been off-colored once, and it was like a very light tan/grey, but the consistency was just like normal vaginal discharge. It's been clear since, but probably not a good sign.

Hi Liz, sorry you're going through this. I hear you about trying to distinguish between normal vag. drainage and fistula drainage.

I don't think I had fistula drainage until I had to have an I&D due to it abscessing. After the I&D there was clear drainage (quite a bit), mixed with blood. This continued for months. Eventually, it looked like it was that cloudy, typical (?) vag. drainage, and then it looked yellowy-green. I've had the fistula for 2 years now, a seton in for nearly 1 year, and if I look with a mirror now, it looks like a white, cloudy drainage; when I wipe it, it's yellowy. Quite frankly, it never looked like stool, except for when I was "holding it" too long. I don't smell anything indicating that it is stool, but it did/does have kind of a weird, mediciney smell? I know, TMI, but just want to give you my experience. Oh - I was able to tuck a cotton round (makeup remover) over the outside hole to help "contain" the drainage. This helped in avoiding skin irritation over a wider area. Also, barrier cream is a good idea if you're having skin irritation.

Dr. Shen tried doxy injections 3 times, didn't work. He gave me anucort and canasa suppositories to thicken things up and help with cuffitis. Both helped a lot. I've been on antibiotics 2 years. They do thicken things up, but I'm trying to keep them at a lowest dose possible (or even quit, on a trial basis at least).

I found sexual relations made things worse in my case. My outside fistula hole is on the outside of the vag. opening - can't be seen with the naked eye, but now that a seton is in it I know where it is.

Your surgeon will give you an idea when going into the EUA what to expect. I was told a probable seton, and that's what I got. Neither the EUA nor the seton interfered with work or any other activities afterwards. I had it done on a Fri. and was back to work on Tues., I believe.

I do take cranberry extract supplements to try and help avoid UTIs (thanks to Sharon for that tip).

Hope this helps - pm me if you'd like other details. It seems as though you caught this early, which I'm hoping will work towards your advantage. Keep us posted!

N/a, thank you SO MUCH for this info. This was what I needed to hear. I can definitely tell the discharge is not my norm, mostly b/c there is so much more of it, but it was very helpful to hear your experiences. Sounds like that I'm having re: subtle color changes. And yes, when I really have to go, I notice the color change/gas more. So, there's def. a correlation w/ BMs. Never TMI! I've totally tried to see if I notice a smell. I want a chemistry set in my bathroom so I can put this stuff on slides and examine it. lol! I also have a lot of pelvic pressure the past couple of days. Almost like bloating, but it hurts to wear pants/be touched. I started antibiotics last night and feel an improvement already. What antibiotics do you take? I can't think it's "good" to be on these as much as I have been, but they do work and make me feel better. I can't tell where the fistula opening is, but I can sort of feel pressure in my vagina/perineum. It doesn't really hurt, I'm just more aware of it.
Again THANK YOU so much for sharing your experience. I too hope catching it early helps prevent multiple trips to CC. I mean, I love them there, but I'd much rather spend my vacay at the beach.
One more question. When they did your EUA, did they go ahead and repair it/put in the seton or do they save that for another time? I know it will depend on what they find, but it'd be great to get this taken care of in one swoop.

With th EUA he first had to put a mushroom drain in Bc it was an abscess and couldn't place the seton (risk of infection) so if yours isn't infected than they probably will decide if you need a cutting seton (not going to sugar coat it HURTS) or a draining seton never had that always was a cutting seton.

Lizz, I was first put on tindamax, then levaquin, amoxicillin and augmentim. All individually. Currently on levaquin (very similar to cipro) which seems to work best as far as drainage and pouch action. Dr. Shen told me that the antibx. is only helping to decrease fistula drainage. Dr. Hull told me that as long as the antibx. make me feel better, to take them. I could play around with doses, etc.

In my surgeon's (Tracy Hull) words, my EUA was a "fact-finding mission and then to see what options were available, and to see if we can control what’s going on with the fistula." So I didn't go in expecting any sort of repair. I met with her about 6 weeks after the EUA, which is when she a) checked the seton, and b) laid out my options (or lack thereof). I think there's a thread somewhere out there that described it in more detail if interested - http://j-pouch.org/eve/forums/...927093226#5927093226.

Dr. Hull also told me it was her policy, so-to-speak, to place a seton prior to any kind of attempt at repair.

The draining seton is a good thing because it allows the fistula to stay open and drain, thus avoiding abscessing. It was placed during the my first EUA. The seton causes me no real problems - I rarely think about it - but if you're going to have one, I'd recommend a bidet! As for the sex question, I need to clarify that both Shen and Hull said that sex would NOT harm the fistula. However, depending on where the fistula is located, it could be painful.

Finally, I found this fistula support group (can you believe there is even such a thing??!) which you might find interesting: http://www.crohnsforum.com/forumdisplay.php?f=76. Not many (if any?) jpouchers but the idea is certainly the same.

Good luck - any more questions, please feel free to ask anytime!

In er. CT showed crohns flare and uterine inflammation from fistula. Ughhhh. Talking to Shen via email to get to CC sooner

Ohhh nooo - so sorry to hear that, Liz. Hope you can get in to Cleveland soon. Keep us updated and feel better soon...

lizz.. in the ER on sunday. not good and I know you are far away from cleveland. Get on a plane lady!

I was in the ER last sunday (but fortunately I am driving distance to CC) and Dr. Shen came in from home and spent 2 hours helping me, getting things sorted, dealing with the colorectal team, getting me admitted, ordering an mri. He was absolutely amazing. I had emailed him the night before and he said go to ER. Then I emailed him when I was on my way and he said have them page me when you get there. Then 10minutes later.. there he was. What an unbelievable man.

hopefully you can get on a plane and get to CC.
hang in there until that time.
liz

Dr. S is the best! He talked to my ER doc last night who was lost in the J-pouch/Crohn's weeds and told him what to do. Tindamax AND cipro for now. Trying to get in to see Remzi sooner but when I called the scheduler and told them Shen wanted me in this week she let out a big laugh. That's a good sign, right?
Oooh, and I just got fired for being sick. Again. Good times.
Surprisingly, don't feel as bad as I thought I would. Just tired and sore and very swollen in my abdomen/pelvic area. I'll tell you when I get there and we can have a CC fistula party!

Hope you get answers soon! But I will join this cc fistula party

I think it is important to point out that not all r/v fistula are crohns related. Some are related to the trauma of the surgery. A trauma related fistula is treated differently.

Noted. There are many reasons fistula occur. My surgeries were years ago, and I have been in a near-constant flare, but always good to be informative

nJk- I was just told that they can be uc related also from
The dr that came in my room which I didn't know but I don't know a lot!

Lizz,
You will make it through this fine. I was just at CC with Shen and Remzi for my vaginal fistula and yes I have Crohns also. My fistula hasn't caused problems yet so we are going to hold off doing anything until I have issues. I'm on cipro and tintazole and occasionally take pepto bismol instead of the tintazole so I am on less anti-biotics. You couldn't be under better care than with those 2. I will be thinking of you and wishing you the very best.

Hi Lizz how was your fistula confirmed? When you say it hasn't given you any problems what symptoms do you have? I am waiting to hear on a surgery date for a possible fistula if found i will have a seton put in.. I had a pelvic MRI a little over a week ago and it showed inflammation where my abcess that was surgically drained is.. I really thought the MRI would confirm yes or no but not my luck):