Recto-vaginal fistula treatments?

[skr]

I have 2 recto-vaginal fistulas, one doesn't really bother me, but the other can be quite painful when if "fills up" before it drains. My doctor told me that pretty much there isn't anything you can for them (especially with active Crohns). He mentioned a possible seton, but said basically if they are draining then I pretty much have to live with them. Any suggestions??

My husband and I are looking to get pregnant and 1) it pretty much impossible to have intercourse with the pain, and 2) I am concerned about being pregnant and having these and having to deal with them.

Does anyone have any suggestions on if there is treatment or anything to do for fistulas??

 

[QueenFox]

Welcome to the forum! I hope you can find some comfort and possible answers here

I have 1 rectovaginal fistula myself (also 2 perianal fistulas) and couldn't possibly imagine how you can bear two of the dreaded things. I hope you can hang in there and not get too frustrated by them. Treatments can require a lot patience and sometimes tough decisions - but they are all in the aim of trying to make you better at the end of the day.

Having Crohn's does make the treatment a bit tougher but not impossible, make sure to see a specialist gastro doctor and colorectal surgeon if you haven't already - I found many doctors, nurses and medical staff had no idea about aspects of treatment. Turning up to surgery for setons and having the nurses ask what they are was a bit alarming for me.

So the treatment options offered to me were setons, humira & remicade, ileostomy. However there are other options out their advanced flap surgery & fibrin glue procedures are just some I have heard of. So don't be alarmed when your doctor says there isn't anything you can do...there definitely are options!

Setons: They are like rubbery stitches which are put in place to actually keep the fistula open, help drain and keep the site clean. Your surgeon would probably check up them and if you notice improvement such as less drainage it means they can be removed and your on your way to healing! I had 3 in place for 7 months, some people have them for longer or shorter periods - really depends on the individual. They are uncomfortable at first and take some getting use to but you can do things to help - having sitz baths, sitting on a donut cushion, using barrier cream for irritated skin, wearing disposable pads etc. They don't always work, as is my case but it is a far less intrusive surgery and usually a simple procedure done by the right surgeon.

Humira & Remicade: These biologic meds are very similar in what they do and each offers there pros and cons. Humira is usually injected by yourself or whoever you choose once every 2 weeks. Remicade is an infusion administered at the hospital every 8 weeks and takes a few hours. Both seem very good drug options for healing draining fistulas (also helping crohns symptoms) but they do have come with some warnings about possible side effects and complications. My doctor advise me that both meds can take up to 3 months to kick in. Again humira hasn't worked for me so far and I will begin remicade in February to trial for 6 weeks - as my doctor believes remicade will be more effective for my fistulas. If that doesn't work I will go for ileostomy surgery - I refuse to live with 3 constantly draining fistulas forever.

Surgery (ostomy): Ostomy surgery usually seems pretty drastic course of action but can sometimes be the most effective, having a temporary or permanent ostomy means that there is nothing flowing through your fistula and it has a better chance to rest and heal. Having an ostomy looks pretty damn scary at first but once you get over the learning curve everyone I know who has one has fantastic lives and keep telling me it was the best decision they ever made. I had a temporary ileostomy about 10 years ago after removal of my large bowel and jpouch creation - so I am a bit rusty in my knowledge of them. If you head over the stoma subforum I am sure the guys and gals there could give you a better understanding.

As I mentioned earlier each options takes time so while intercourse may not be an option for the next few weeks or months it doesn't mean you won't be back in action later this year Make sure you and your husband understand this and think of other ways you can show affection in the meantime. My partner and I have really struggle having sex life over the past year but we haven't let it stop us from showing our love for each other in different ways. I would also discuss with my doctor the possible chance of the fistulas returning, their position in the vagina (lower or higher means different approaches) if you become pregnant should you choose a natural birth? as this may aggravate or open the fistulas again.

Sorry for the length - trying to fit as much info as possible in. If you have any questions everyone here will do their best to help

 

[Lisa]

From personal experience, I had multiple fistulas that healed/closed once I went on remicade. Although I had been seeing a surgeon, he never suggested surgery or setons for them....I did not have complications though.....I dealt with them through pregnancy, and went on remicade when my daughter was eight months old, and u had started to flare again.....I was in remission during my pregnancy, but got pregnant right after a flare and hospitalization.....

 

[skr]

The doctor I see is a colorectal surgeon. He seems to be pretty knowledgable. He did mention something about a seton but then kinda dismissed it because of the active Crohns and because they are draining. He said doing surgery or anything could just cause more complications and you wouldn't do them with active Crohns. I had the fistula opened/drained in early December as that is when it onset and i just went in for a post op last week and was told the above. THe doctor didn't initally think it was a fistula because he couldn't feel a tract, but after telling him the symptoms he did say sometimes you can't feel the tract and seemed to believe me on that is what it is.

I am currently on Lialda and azathioprine.

I have read a lot about Remicade in different forums and it seems to work for a lot of people. Doctor has never mentioned anything about meds to heal the fistulas, just pretty much what I stated above.

 

[fazell72]

I have had crohns for 18 years, and about 2008 I started with what I thought may be the symptoms of a fistula. Although nothing seemed to drain really from it, I suffered a swelling which would subside, flu like feelings every few weeks or so. After being fobbed off by various dr's I fell pregnant a couple years later. I had a natural delivery, but my baby was big, and my 2nd stage labour was two hours plus, and I ended up having a ventouse, and episiotomy. I have since suffered terribly from the fistula which no drains each time my bowels open. I have had one attempted repair which didn't work, and am now scheduled to have a gracilis muscle flap repair in a few months. My colorectal surgeon - advised if I ever had any more kids I should have a c section. Wish someone had told me this before I gave birth - maybe I could ve avoided what has been hell over the past few years. Good luck!

 

[mish2575]

Remicade closed my recto-vaginal and peri-anal fistulas. I've since switched to Humira and recently discovered i have a large number of communicating fistulas in my rectal area.

I had children on Remicade (they just stop it for the last trimester and for however long you want to breastfeed). My ObGyn and GI suggested that i have C-Sections for both pregnancies though so that my closed/scarred fistula did not get ripped open during birth.

Good luck.

 

[QueenFox]

He said doing surgery or anything could just cause more complications and you wouldn't do them with active Crohns... Doctor has never mentioned anything about meds to heal the fistulas, just pretty much what I stated above.

I have had many doctors and surgeons (luckily not my primary doctors) look at my case and say the same thing or dismiss alternatives, it is really frustating. Don't let this get you down and it's good you are seeking info here, so you can discuss with your doctor. Trying any different treatment may have some side effects or complications yes...but as long as you understand this it should be your decision to try them. Also think about the complications of not doing anything - will the constant draining and having any opening become infected at one stage? Remicade is also used for other crohns symptoms so could also help with other active crohns and seems like a really decent option for you.

Doctors also are obviously looking at medical issues and sometimes neglect quality of life issues such as the pressure put on relationships, career, pursuing hobbies, social life etc. For me - I know not allowing my doctors to try different treatments would mean greater complications in those aspects of my life - just my perspective though.