Help with recto vaginal fistula

[flowergirl]

Hey ladies. Last week I had a flap procedure to fix a fistula that ran alongside my vagina, not in it. Needless to say, it may have ? Fixed the original one, but now I seem to have a horrific vaginal fistula. I'm still on pain meds and haven't had a really substantial bowel movement yet, just smaller ones, but most of the stool seems to be coming out the vagina, not my butt. :yfaint:
How do you all deal with this? Because I'm fresh out of surgery I can't take baths yet. I'm taking showers, multiple, through the day. I'm trying to use baby wipes and soft toilet paper. I also have my period. :thumbdown:
Any suggestions to keep the area clean and not irritated? I can't believe so much is coming through. We're talking pieces as big as my thumb. My entire thumb.
I don't see the surgeon til Monday. I'm kinda freaked about the possibility of a bag, only because this surgery obviously didn't go well I'm afraid of another to go wrong. And am already on remicade, and bowels looked fine, which is why they did this in the first place, because I was a good candidate.
Sigh. Any advice?

 

[lizzy]

Oh man, I have one of these bad boys they really suck. When mine was bad I took baths with TCP in them but apparently just after surgery baths are bad because they spread the germs, mine was healed by then. It sounds like you are doing the right thing. A surgeon also told me not to wear trousers which helps (although its slightly awkward to walk around in your pants 24/7). You can get wet toilet paper here which is quite helpful.

Do you think you should go to A&E? Is it causing you pain?

I am getting a "plug" put in this week. It has a 30% success rate so fingers crossed. I'll let you know if it works!

Hope you get some good advice on Monday. xxxx

 

[flowergirl]

Oh it's painful but I still have lortab from the surgery. Doesn't help that my stomach is still messed up from surgery/medications. I feel like if I could get back on a regular bowel schedule it would help. What is tcp?

 

[Sailorluna]

Hi flowergirl,
I am sorry that you are going through this. I sometimes pass loose poo through there but never chunks. The hole must be pretty big?? Are you saying this happened during surgery on a different fistula??

The only suggestion I have for the irritation is calmoseptine, it can be used on all the external bits as a barrier. My surgeon suggested a light tampon for when I am passing a bit of liquid stool. I have been too nervous that it would cause an infection though, and it may not be a good option with chunks.

I hope they can fix this for you.

 

[flowergirl]

yep, during (or right after) surgery. lucky me. one door closes, another one opens, right? i have some of that calmoseptine. the problem is more the irritation inside the labia. thanks anyway...

 

[Sailorluna]

Did you see the surgeon today?

 

[flowergirl]

yeah, i saw the surgeon. she wants to do a temp ostomy (which i'm fine with) and then wants to do some major surgery where they take muscle from my leg and stick it between my rectum and vagina. she wanted to go ahead and do the ostomy, which i have held off for now. i'm still trying to recover from the other surgery, and i just feel like i need to think about my options/get a second opinion, something. i think i have something underlying which makes me flare in stressed situations, something adrenal or thyroid or something. i feel like i need to figure out what that is and get it under control before i try another major surgery that could possibly result in incontinence. of course the surgeon wants to go in and cut again, that's what they know. i'm wondering if maybe there's an option of a bag and upping my remicade dose or something. i just know that i feel like my body isn't ready for another surgery right at this second.

 

[Sailorluna]

Wow, that sucks. There is nothing wrong with getting a second opinion before going through with another major surgery. Will you allow them to do the ostomy though? It sounds like it is needed.

I believe that it is common for Crohns to flare with stress without any other underlying issues.

 

[flowergirl]

i think i'm gonna get a second opinion. i'm also getting referred to a rheumatologist. i have a lot of things going on that aren't crohn's related. i've also never had a positive biopsy and none of my intestines are inflamed.

 

[Ihurt]

umm, wow, I was reading your posts. You mean your intestines look fine and there is no inflmmation at all?

Personally I would try everything I could before letting them cut your intestines. I mean I do understand you have the fistula thing, but maybe getting a second opinion would be best. I mean any type of surgery to the abdomin should ONLY be done when it is absolutely needed. I know sometimes there is no choice in the matter, but I would want to make certain. I mean once they start cutting your intestines, then you have a great chance of needing more surgeries to repair damage from the original surgery( scar tissue etc..) and it can become a viscious cycle. Defineitely see if there is a medication that can help heal things first before doing an invasive surgery like that. I mean especially since your intestines are normal...

i think i'm gonna get a second opinion. i'm also getting referred to a rheumatologist. i have a lot of things going on that aren't crohn's related. i've also never had a positive biopsy and none of my intestines are inflamed.

 

[Sailorluna]

Good luck Flowergirl. Let us know how your second opinion goes.

 

[flowergirl]

So I have an appointment with mayo next week. Its with urogynecology/surgical gynecology. The dr's clinical interests include fistulas, so at the very least it's probably a good place to start.
I also have an appointment there with internal medicine in February to figure out what the heck else is going on. Today I was so dizzy getting off the couch I thought I might seriously be close to passing out. Blegh.

 

[Sailorluna]

Hey Flowergirl,
I was thinking about you today. How did your second opinion go?
How are you feeling these days?

 

[flowergirl]

Eh, the colorectal surgeon wanted to do a colonoscopy to do a sort of double check for crohns, because he's skeptical whether I actually have it, which I agree with. But I feel like I need to figure out what else is going on first, as he wants to get me off remicade, on a temp bag, and do major surgery again. It seems whenever I have any sort of medication or colonoscopy or surgery I "flare" but not really a "crohns flare". Hard to explain. I believe I have some other process going on and it's manifesting itself through the muscles In between my rectum and vagina.
Anyhoo, trying to get in with an endo, have an appt with rheumatology. Mayo ran a bunch of blood and the only things that were slightly off indicated inflammation and/or anemia (off the wall sort of tests). My ferritin is low. My crp, sed rate and Ana are all normal. All of the antibody things are normal. No lupus or celiac or any of those.
I'm leery to go off the remicade until I find some other treatment, because it is keeping a lot of things in check, even if it is just a band aid solution. I still have a big hole in my vag. Dr says its about a cm wide, maybe slightly bigger. I'm able to function. It can get really irritated if I go to the bathroom a lot though. Luckily (haha) it's in the very lowest part of the vag, so at least stuff isn't traveling thru the whole channel, if you know what I mean.

 

[Jaano711]

Oh Flowergirl,
I do hope that you are going ok. I had a ostomy done for my fistulas, and it has been a whole lot easier than dealing with gunk coming from places it shouldn't. It is such an awful situation you are in. I hate fistulas they are both physically and mentally debilitating. I was so ashamed by how my body was letting me down that I just could not discuss it with anyone including my husband or my doctor. I think i was more ashamed about how badly my body was letting me down. I felt all alone and like some kind of freak, I am just so glad that I managed to find this forum, as it was the first place that actually made me fell ok and that I definitely wasn't alone.

I wish you success with you surgeries and hope all works out in the crohns/ not crohns deprtment.

 

[Bryonyboo]

This forum is so good, it's the only place I feel I can talk about my fistulas and people actually understand.
I have found an amazing spray that might help, it's called Motherlove sitz spray. All natural, give it a go, it's helping with the soreness and smelliest of my recto vaginal fistula, makes me feel a little more human!! I got mine on amazon and don't go anywhere without it. X