Got Rectovaginal fistula?

[Cookie]

Hi Everyone,

I am new to this forum and just mostly looking to get this off my chest, I guess...
Also just wondering how others deal with this issue...

I am 36 years old and was diagnosed with Crohn's 6 years ago. Aside from an initial bout of cramping/diarrhea, I have not had too many "digestive" problems. However, I have had so many problems with fistula that I think I am going to lose my mind.

My initial symptoms were accompanied by a rectovaginal fistula that would not appear to go away. I took countless doses of Cipro and Flagyl(yuk!) which helped with the inflammation, but as soon as I would stop taking them, the inflammation was back. I also tried remicade which did nothing for me. Finally in Aug of 06 I had a flap advancement surgery which seemed to do the trick. All was well! Well, at least for 6 months until another fistula showed up. And then another. And another. Right now I'm not even sure how many I have (my doc says "multiple") but the whole area around my vagina and anus is completely irritated. I am taking Cipro and Flagy again ( I feel like I live on these meds!), along with a "homemade" suppository prescribed by my surgeon aa well as a topical steroid cream (also take imuran). My surgeon is trying to decrease the inflammation in order to do another surgery.


I guess my question is, how do you ladies deal with this from an emotional standpoint?? I try hard to stay positive and not think about things, but I have to be honest, my sex life is really in the crapper right now. I have been married for just over three years and we haven't even been able to think about having kids. My husband is very supportive, as much as he can be, but the truth is, I think the whole thing just grosses him out. I mean, who wants to have sex with someone who is leaking smelly feces through her vagina. Not to mention the fact that it is way too painful to even think about having sex right now. It has been months since we have had intercourse and I get constant mouth sores, so other alternatives are not much more appealing. I just don't feel very "sexy" and I guess I need to get over this.

I don't really talk about this with any of my girlfriends. They all know I have Crohn's, but I have never shared any details...way too embarrassing.

Just looking to vent to somebody who has been there...thanks!

 

[jed]

hey Shady,

lacking the same genitalia i cant understand how it feels physically for you, but i certainly understand how hard this disease can be on us and on our partners.

theres plenty of people that have mentioned bad sex lives for a while here, even without the fistuala's its hard trying to get in the mood when your constantly thinking its gonna be time for the toilet again, or that its going to kill your bones due to arthritus. great fun sometimes huh?

welcome to the forums
hope you enjoy your stay!

jed

 

[My Butt Hurts]

Hi Shadycat.
I can see how you would not want to discuss that issue with friends. And I am glad that you had the courage to share it here. We are all very understanding of details like this. I have no help for you unfortunately, but welcome to the forum!!
Too bad the Remi didn't work - it is supposed to be good for keeping fistulas inactive. Maybe Cimzia or Humira will work for you? They are similar to the Remi. With that much pain you might need something strong like that.
Good luck - hope you figure something out really soon, and welcome again!

 

[danman]

How-a-ya Shadycat.

I've had a very similar experience to you, although with different genitalia!!!
Have a look at my story.

The last resort for me has been my Ileostomy to bypass the large bowel. So far this has worked and my fistulas have not returned.
How would you husband feel about you having a temporary colostomy pouch?

I must admit, my libido has finally returned and I feel great. I'm getting another sperm test in 3 weeks time to see if my surgery has fixed my lack of sperm problem.
The GI Doc seems really concerned about whether my problem was caused by the fistulas or the drugs I've been on.

I must update the infertility thread soon. The GI Docs are very concerned about the various drugs that we all get for Crohn's. My GI told me yesterday that they are trying to set up a research trial with male Crohn's sufferers and their sperm counts.
He said they were having difficulty getting a lab to do the tests, as all the labs are so busy already. They will need to organise a lab to check tests full time as it take a full day to do the test and generally all the labs in this country only do 1 test per day.

The drugs they are most concerned about are 6-MP and Humira.

EDIT: Sorry for hijacking your thread.... I really must update the fertility thread.

 

[Cookie]

Thanks to everyone for your encouragement and support.

I don't think I have reached the desperation point to consider an Ileostomy. I'm not sure exactly what my surgeon has in mind, as she said she can't consider any surgery until the infection is cleared up. I have a visit scheduled for Jan 22, after taking 1 month of Cipro and Flagyl. So far has been 2 weekes and starting to clear up, but not complete. Also, this is a different surgeon than the one who did my flap repair. I switched gastro docs recently b/c my first doc suggested I try Humira and after reading about it I wasn't too sure. My new doc thought it was too similar to the remicade and since that didn't help he didn't think it was worth trying. The fertility thing is always in the back of my mind. Thanks, danman, for your story. I have not had any fertility tests, but my husband and I have not used any birth control since we have been married, and no pregnancy. My other GI doc made me promise to use birth control when he put me on Imuran, but my new doc said he has had patients get pregnant while on the drug and it's not too dangerous. Does anyone else have any info on the subject? Just curious. It's not like pregnancy is a concern right now, considering my sex life. lol

 

[danman]

I don't think the fistulas will cause infertility in you in the same way that it effected me. my fistulas wormed their way around my testes causing my problems. So mine was solely a male problem.

I found Humira very good for a few years, don't discount it yet.

I actualy don't find the Ileostomy that bad, in fact I wish I'd had it done years ago. It does seem to be a taboo subject, even amongst our kind. But the relief I've had cannot be protrayed here.

 

[Cookie]

My concern with fertility is because of the medications, specifically Humira. I can't remember where I read it, but when I was researching the drug, I came across warnings about pregnancy and fertility. Maybe I'm just paranoid. It really bugs me that I take as many meds as I do. When it comes to drugs, I feel that less is better. My mother suffers from schleraderma and I often think that her dug interactions cause more problems than her disease...but that's another story entirely.

I am really glad to hear that the ileostomy has helped you. For me, I don't have the severe problems that a lot of you have. It just seems a little extreme. Like I said, I can deal with the fistulas, they can just be a little emotionally draining now and then.

 

[ErinDF]

Hi Shadycat,

I have the same "lady parts" as I like to refer to them, and the same problems with my lady parts. They've been going on really bad for about a year now and I also have not been able to have the *sex*. My boyfriend of two and a half years has been really great about it, but that doesn't stop me from feeling EXTREMELY guilty about the whole thing. I mean, none of this can be fun for him and he is always unerringly supportive. His line is "I just want you to get better." WHich I'm sure is true, but I'm also sure its not ALL he wants.

I, like Dan, just had an ileostomy, at least in part to treat the fistulas and the severe fungal rash that had effected that whole area due to the constant drainage. So now, two months out from surgery, the fistulas I can see have shrunk to almost nothing, the drainage has stopped, and the pain has finally healed. Even the rash is mostly healed (honestly, that was the worst, it hurt to walk, it hurt to sit, it hurt to do everything). My ileostomy is temporary and the plan (hopefully) is to reverse sometime in the Spring. I have to say that an ileostomy is not something I would suggest lightly, but knowing the absolute nightmare that non-responsive fistualas can be...it is a solution you might want to seriously discuss with your doctor. You cannot live on Cipro and Flagyl alone! (I also have done many, many doses of that...even though my surgeon knew that it would never actually cure the fistulas because they were too severe but at least it healed the worst infections and calmed the symptoms). I also tryed Remicaide which is supposed to target fistulas and that didn't work either. Hence the surgery.

Good luck with everything. Trust me, I know how much it sucks. Luckily it sounds like u have a supportive husband which I think is key (even if they drive us crazy sometimes).

 

[TammySue62]

Hi Shadycat
I hear yah and I no exactly what your going threw.I have been dealing with
3 fistulas for over 5 years now. I have been fighting and postponing surgery
for 2 years now. I have 1 vaginal and 2 other side by side on my right cheek
making it unbearable to sit on most of the time. i had to wear a pantyliner
24/7 until recently I had to change to a hankey due to more skin irritations

These suckers literally suck big time....some times they are small with little
drainage to infested with mega odor and drainage. I soak alot with epson
salts it does help.

I too have been on every med out there as well Could not take the flagyl via
pill due to constend nausea so I did get it IV.Now I dont take either cipro or
flagyl cause I just got fed up with being sicker...So I try to say to myself. well
I am stuck with this and there is not a thing I can do about it (beside surgery)
just another side affect that comes hand and hand withthis freagin disease.

I now exactly what thoughts your thinking when your having sex.cause i am
in your shoes. Thank god my other half is a very understanding guy and patient.
It does help alot to tell and ask him how you feel about sex. what feels good
and what does not.Your afraid he will look down there and go e u (sp?)
I have thought the same. If your mate loves you enuff he will look beyond that
as though their not even there.With time you can tell yourself that there not there
or interfering with sex.Thats what I say to myself...it does help.

Im not very good with words I know what I am thinking but is hard to put
or type down on pen and paper I should say tech typing now.
I hope this helps if you have any more questions feel free to ask

Oh yah on the child rearing they told me the same thing 30 years ago that
I could not get pregnant and to some miricle 20 years ago I had a daughter
who was concieved on my wedding night(now ex-husband)I too used no
conticeptives cause I couldnt get pregnant they told me. I went threw the hole
9 months without a glich.Easiest labour ever only about 6 hours in labour.My
point That was the best time I ever felt with this disease.My daughter is a healthy
20 yr old with no problems except she has asthma .She was a small baby5.4lbs
due to my lack of drinking milk which I still cant drink to this day.
Sorry for the long post but I tried to type as I was thinking like I said if you
have more concerns or questions ask away.

 

[Cookie]

Thanks, Erin and Tammy, for sharing your stories. Not that I find comfort in your suffering, but it is nice to know that there are others out there that know what you are going through.

I do have another question for anyone out there taking and immunosuppresant such as imuran. How do you know when to call your doctor when you are sick? I have had a cold (started with flu like symptoms, now just mainly persistant coughing) for over two months now. I have a general feeling of fatigue and nausea, but that may be from the flagyl, as it always makes me feel this way. Last night I started to feel pain in my lower back and I am worried that I may be developing a urinary tract infection. I have only been taking imuran for 8 months, so I'm not sure how to react when I get sick. Are these things anything I should be concerned about?

I also wanted to add for Tammy... I, too, have to wear a panty liner 24/7 and it can be quite irritating. I have discovered that Always makes a panty liner that is far more tolerable than any other I have tried. I have to change them more frequently than others because they are very thin, but difference in comfort is well worth it. Here in the US they come in a purple package and are individually wrapped in blue plastic. The conveniently fit in your pocket as well. If they are available in your area, I highly recommend trying them.

 

[ErinDF]

Hey Shadycat,

I have also had to wear pads constantly for a year (pantyliners don't work for me...or at least, didn't work for me). I liked whatever brand of pantyliner they sell at Costco...I forget which one. That is what caused my fungal infections, that it was always "damp" down there.

In answer to your question about immunosuppressants and getting sick...I am far from an expert, but my ley person answer is that you should/could probably just get in touch with your GP. Here's the thing, for illnesses other then Crohn's I don't think we have to be treated any differently then other non suppressed people, we just need to be treated more aggressively (if that makes any sense). So I don't think you really need to contact your GI about a cold or a UTI...just make sure your GP gives you good meds (and make sure you EMPHASIZE that you are immunosuppressed). In college, all I had to say was "I have Crohns and I'm on immunosuppressants" to get the "good" antibiotics or the cough syrup with codeine from the health center. Everyone else got stuck with the weak stuff.

Hope that helps, or at least tentatively answers your question...

 

[Cookie]

Thanks Erin. All of your posts have been very helpful. And now that we have discussed drugs, sex, pantyliners and vaginal leakage, I should probably tell you that my name's not really Shadycat...it's Lori.

 

[s.a.m.]

Hey Shadycat,

I have also had to wear pads constantly for a year (pantyliners don't work for me...or at least, didn't work for me). I liked whatever brand of pantyliner they sell at Costco...I forget which one. That is what caused my fungal infections, that it was always "damp" down there.

Hope that helps, or at least tentatively answers your question...

I never thought wearing them could be causing any issues, but the last time I went into the hospital they said there was some skin irritation, but never said any more about it and I never knew it might be a problem until I read this thread.
So what is the best option? Pantyliners, pr pads or what?

 

[beth]

I've been using the 'breathable' type pantyliners our local Tesco sell, which aren't too bad, although due to other non-Crohn's issues I'm prone to fungal infections anyway.... So yup I get another infection.

Some people on here use small squares of gauze placed in the bum cheeks quite sucessfully.