Rectal Vaginal Fistulas

[MrsPooh1]

51 years of age.  I have survived 30 years of Crohn's - for the most part - active Crohn's. 2 sb resections/1colon resection. Due to a stricture I had a bowel resection last year.  Prior to the surgery I had been passing vaginal gas which indicated something was wrong.  After the surgery as I was preparing to go home a rectal vaginal fistula presented itself.  For the last year I have dealt with the horror of this condition - I found the Atkins diet slowed down the bowel and produced more formed stool, lessening the symptons of the fistula.  I am on Remicade every 8 weeks, 6MPdaily, Cipro daily, lomotil daily, tigan and darvocet as needed. Also vaginal inserts of estrogen in an attempt to build back up vaginal wall - I am post menapausal.  6 weeks ago the fistula reopened fully. I then began to live in a bathroom - 20 formed and/or watery stools a day. 4 weeks later I was admitted to the hospital for uncontrollable cramping pain, frequent bowel activity and weight loss - I was beat. Small bowel follow through revealed nothing.  Colonoscopy revealed fistula area and perhaps a different fistula area higher up in the colon.  I am exasperated with discomfort and living in a bathroom yet doc feel there is nothing significant revealed going on to warrent any form of discomfort.  He has referred me to a local surgeon for workup of this complaint.  I have lost nearly 10 lbs in a couple of weeks recently/I am not one to lose weight.  Have seen specialist in NY last year who says no surgery and no steroid use.  Question: Do active fistulas cause extra bowel activity? Could that be the reason I cannot stay out of the bathroom?  Do active fistulas cause cramping pain?   Doc found no active disease in colonoscopy or sb followthrough.  Sed rate is 20. Other blood work seems to be ok at this time.  Please help me.  I need to know what is causing these new symptons and if they are fistula related.

[bottoms-up]

I have just read your info. I have the same problem and I am having surgery this mth. & yes I have been in pain for over a year. I have had 4 fistula surgeries already. However, do to the location of my new fistula my Dr. is going to preform a rectal vaginal reconstrutive surgery. He said that I will NOT have another fistula come thru in my vaginal area. If it weren't for this i would be looking at having my colon & rectum removed. I was told that it is a rare surgery & few Dr's know about it & even less can preform it. As it is I have to drive over 100 miles just to find this surgen. If you haven't done anything yet or would like to sare info please fill free.   And I have found that Atkins helps too.

[bottoms-up]

I have just read your info. I have the same problem and I am having surgery this mth. & yes I have been in pain for over a year. I have had 4 fistula surgeries already. However, do to the location of my new fistula my Dr. is going to preform a rectal vaginal reconstrutive surgery. He said that I will NOT have another fistula come thru in my vaginal area. If it weren't for this i would be looking at having my colon & rectum removed. I was told that it is a rare surgery & few Dr's know about it & even less can preform it. As it is I have to drive over 100 miles just to find this surgen. If you haven't done anything yet or would like to sare info please fill free.   And I have found that Atkins helps too.

[pharris]

I have been tormented with rectal vaginal fistulas since the birth of my son.  3 failed surgeries and planning the forth. Hopefully it will be fixed. Unfortunately, I am being forced to pay cash for top specialist and have to figure that out.  HMO doctor says "it's just a little embarrassing". Obviously he doesn't have one.  I have been told by several doctors how rare this is.  I'm beginning to realize it's not.  My guess is that women are so tormented and humiliated everyday with the physical disgust and pain, the emotional loss of any sexual esteem, no self esteem and general fear of where is the restroom and do I have any spare clothes with me.  I've learned to keep perfumed cream at my desk and kick my computer when gas passes, bubbles and makes a racket.  Not to mention, that hurts.  
This all is unacceptable to anyone that has RVF and seems not serious to those who don't.
I think it's time that someone figures out what really is going on here.  I've had it and am very angry.

[kimbacat]

I'm glad you found it helpful.  it's a good bunch of people on that board.  I totally understand your hesitancy to have ostomy surgery.  like you said, it's a tough decision with no guarantees.  yup CD is the gift that keeps giving!  

best of luck with whatever you choose to do.

[MrsPooh1]

I found the website you recommended very helpful in learning about different options and patient comments on those surgeries.  What a mess.  I am holding on and praying for a miracle.  I would in a minute have a colostomy if I thought it would stop this health nonsense - with so much small bowel disease and surgeries previously I don't want to have any surgery if I can avoid it.  I do see a surgeon this week.  It seems in this disease process that one thing begats another thing.

[yoshi]

cipro may be responsible for your diarhea problem.

[PAJ]

Don

[Kevin Pho, MD]

Surgeon has kindly addressed your question in his comments below and I agree with his assessment.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[kimbacat]

sorry, don't want to be b*tchy, but there is nothing "minor" about a fistula in a person with Crohn's, no matter where it is.

[MrsPooh1]

I take cipro 250 daily as I have been encouraged by more than one doc that it has been know to help the rectalvaginal fistula closure. I have taken it for over a year. I also become concerned about taking an antibiotic everyday but no more than dumping 6MP and Remicade in my blood stream.  I have lost all of my hair once in the drug regiments and am trying to hold on to it once again.

[kimbacat]

you are right, different fistulas require different treatments.  I was just listing the types of treatments those of us with fistulas have undergone.  not all are appropriate for her type of fistula.  a cutting seton definitely would not be used for a rectovaginal fistula, but a draining one is sometimes used.

[yoshi]

why are you taking cipro everyday??
you may want to talk to your doctor -it is a strong antibiotics and if you take it long enough,it will upset your flora and something else too.

[surgeon]

there is a very signicant difference between an enterovaginal fistula and a fistula in ano. I was not trying to get into a spat over the comparative suffering which accrues from various ailments. In saying "more minor" I was stating a truism: neither the effects of nor the treatment required for the one are as severe as those of the other. This is not the same as implying that one is no big deal; nor is it fruitful to try to quanitify such things. Not everyone is aware that there are many different fistualae. To conclude seton is a treatment for an enterovaginal fistula could unnecessarily sidetrack a discussion with one's surgeon. It did not occur to me that someone with a fistula in ano would be offended by what I said: if so, I'm sorry. It clearly was not my intent.

[kimbacat]

MrsPooh,

you might want to check out the site: www.ibdsucks.com

in the "CD, UC, IBS and Other Conditions" folder, there is a whole subfolder on fistulas.  there, you can find help, support and current info from a whole bunch of us that have fistulizing CD.  I think the gamut of treatments have been experienced in the group: meds, glue, cetons, fistulotomy/ectomy, flap surgery, resection, etc.

one of the nasty things with CD is that you can do everything absolultely correctly and still have things go horribly wrong.

I hope you can find relief soon.

take care

[MrsPooh1]

Am I the only one who feels discomfort or pain with a rectal vaginal fistula?  After a year I find this mess continues to be a focus of my life.  I am eager to hear from others who have been in situation and have come out well.

[surgeon]

Not all fistulas cause cramps, but some do: it depends on the reason for the fistula, and the exact anatomy of the area. There is likely inflammation at the point of fistulization, and that could cause small bowel to adhere to the area, and at the point of adherence there could well be a twist or stricture causing partial obstruction, and therefore cramps. It's highly unlikely the fistula will close on its own, no matter what medications are used. As you found, sometimes the amount of drainage can be reduced by dietary means which cause the stool be more solid; but it may not work for various reasons. The bottom line is that it's nearly certain the surgeon will tell you surgery is necessary; the exact nature would depend on anatomy, prior surgery, etc. It's possible that the best option would be colostomy, because with Crohns and prior surgery, it may be judged inappropriate to hook the colon back up to the rectum. This is less than perfect, but at least the output would be controllable into a bag as opposed to constant leakage. On the other hand, if the Crohn's doesn't involve the colon/rectum, and the fistula is from the small bowel, it's probable that hookup with more normal bowel control is possible. Without knowing the details it's not possible to say for sure: but there's reason to believe that surgery could cure the fistula and the cramps.

[surgeon]

please be aware that there's a great deal of difference among fistulae;a rectovaginal fistula is NOT, for example, something to be treated with seton. It's a very different situation from, say, fistula-in-ano, which is the more common -- and more minor -- fistula associated with Crohn's