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Fistulas suck bofa

F

flowergirl

Location
florida
fistulas suck bofa

v. depressed. have a fistula that is rightnextto my vagina. luckily not in it, but still.
just got my 4th remicade infusion. still not closed up. and it's so frustrating because i'll have a couple days where almost no stool comes through and i get all excited thinking it's healing, and then the next day surprise! i know i should be grateful that the remicade has cleared up most of my other symptoms, and i am thankful for that, but i would honestly rather have 10 hemorrhoids and diarrhea all day than a hole in my cooch.
i will say it has closed up part of the tract. i actually had 2 holes. pretty sure it was the same tract, it just decided to go further and make another hole further up my labia (sorry for the graphic nature of this post). at this point i can't see a tunnel in the 2nd one, and the area around it is (slowly) healing. i guess it's just going to take time for the larger tract? has anyone else been on remicade and it took a long time to close up your fistulas? i was hoping for one of those miracle it-closed-up-in-3-days stories....
i really don't want to go the surgery route. i know it's difficult to find someone that even has experience with it, and what with it being in such a sensitive area, i just know with my luck it'll make it worse instead of better.

anyhoo. i know i shouldn't be complaining. i know a lot of you have it worse than me. i just want to be normal again. i don't want holes where there aren't supposed to be holes. i can deal with a lot of things, and i've been doing ok with it, considering, but today it just hit me.

blah. sorry. over and out.
 
Cookie

Cookie

Hi Floweregirl,

I understand completely. I also had a vaginal fistula and Remicade did not work to close it up. I had two flap advancement surgeries (first time failed, second was sucessful so far). There are some risks to the surgery, but for me it was well worth it, even though it took two attempts. Where are you located? I can give you more info if you wish. Feel free to PM me too.
 
F

flowergirl

Location
florida
thanks cookie. i'm in north florida. the closest places i would even consider going are the University of Florida or U of alabamabirmingham. there's a mayo in jacksonville. i just don't want it to end up going into my vagina when it's not there already. i'm thinking least invasive possible. i'm still holding out hope that it will eventually heal up with the remi. i do appear to gradually get less and less stool coming through. i just don't think i've ever heard of anyone having to go through less than 2 surgeries (some people way more) to fix it. and i have a husband who works ALL the time and a 3 year old. i can't afford to be out for repeated surgeries.
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
flowergirl....there IS hope that it will close up - I had multiple fistulas, perianal AND rectovaginal - and they were closed/healed with Remicade. NO SURGERIES!!!

It is a good sign you are seeing less output from there - as long as that continues I'd put off any surgery.....I don't know how long you have been dealing with fistulas, but I had them for over 2 years before getting on Remicade and getting things to heal (no surgeries).....I even got pregnant and carried to term while delaing with them (I did have a c-section to avoid doing any damage though).....the Remicade started after that....
 
F

flowergirl

Location
florida
my first hole popped up in late june, the second hole in mid august. i started remicade in october. like i said, the second hole has closed up, and that one probably took 2 - 2 1/2 months, that's why i'm hopeful for eventual closure of the original hole.
my dr said the same as you. as long as i was seeing any improvement, even really slowly, to stick with it, and keep surgery as a last resort. luckily i've always had drainage and no abscess/infection.
i'm just really sick of having this hole.
stupid hole!
:runaway:
 
SarahAnne

SarahAnne

Hey, don't worry about venting, it doesn't matter how much "better" or "worse" your symptoms are....none of us should have to deal with any of it!

I sort of know what you're going through. I was so ill that I welcomed my surgery, and I think I was holding out some kind of crazy hope that it was going to solve all my problems. I am so much better than I was before, but not as healthy as I imagined I was going to be and it's really frustrating. I have to keep reminding myself to take it one day at a time and to be thankful for any improvement.

Good luck with the Remicade, I know it's slow going but hopefully it will continue to help.
 
F

flowergirl

Location
florida
yeah, i've been reading about your issues. that sucks. i was hoping the surgery would be a cure all for you, too. are you going back for a follow-up soon?
course, i caught my kid's cold, so i'm sure that has a something to do with the fistula acting up. i'd say the remicade is doing a number on my immune system, but considering that he frequently gets in my face to talk emphatically and thereby getting spit in my mouth, eyes, etc., it is no wonder i'm not sicker than i am.
 
SarahAnne

SarahAnne

I am going to see my GI on the 7th. I am only on Remicade for my Crohn's right now, so I imagine I'll come home from that appointment with an armload of new meds. I don't really care at this point I just want to feel better.

I hear you about catching the kid's cold! My kids were sick all weekend, and I kept them out of school Monday and Tuesday. We went to the doctor on Monday, they both had a virus, so thankfully no antibiotics. My daughter was also diagnosed with asthma, which didn't surprise me given all of the breathing problems she has had, literally since birth. Today I've got watery eyes and my nose is running and burning something fierce. I hope it's just allergies. I know my immune system is crap right now cause my eczema and scalp sores are flaring up.

If it's not one thing, it's 6 or 7.

Hope the Remicade heals you up completely. I had lots of intestinal fistulas the first time I was put on Remicade and it healed them, but it did take a while because I had so many and they were so bad. Try to be patient, sending healing thoughts your way!
 
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