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menstuation/fistula


Tue, April 21, 2009 12:00 AM

Back in 2007, at the same time I started my menstuation, I developed an anal abcess which led to a fistula.  After several surgeries, MRIs, tests, medications(6mp,Remicade), and a colostomy, my anal fistula will not heal.  After my colostomy surgery in July of 08, my fistula was not completely healed, but it was not affecting me, accept when I start my menstuation.  Every month, when I start menstuating, my fistula begins hurting and swells.  This month, my family doctor had to put me back on antibiotics due to a fistula infection which was started when I began menstuating.  My surgeon asurres me that there is no corrilation between the two, but why does it happen.  Is there anyone out there who experiences the same thing?  If so, any advice.

FPO mhl3610
Joined Mar 7, 2008

Fri, May 29, 2009 6:43 PM

 Reply posted for KAREN D.

Hi Karen,

I was so desperate to find someone who is going through what I am going through.  I have had Crohn's since I was 14 and I'm 29 years old now and I have had a Rectovaginal Fistula for 5 years now and for 5 years I have had gas and stool pass from the vagina. It has been extremely hard and embarrassing to deal with. The gas passes without control and stool passes everytime I use the restroom. Having a 'real' realationship with my husband has been very hard. I am getting really frustrated dealing with this. I had attempted surgery from the vagina area and 6 weeks after a hopeful surgery I was feeling the gas and stool pass through again! After one failed surgery my gastroenterolgist recommended that I try Remicade. So sfter the third dose of Remicade I developed a really bad vaginal irritation that just wouldnt heal, it lastest 7 weeks (hell), when I stopped the Remicade the irritation disappeared. So, I think that is my side effect from Remicade which is unbearable. I met with another surgeon who recommended surgery from the anal side since the vaginal surgery was not successful. Today was my surgery date and I went under anestesia and everything, I woke up thinking I had the surgery. I found out the surgeon could not find the hole, even though hours before I had surgery I had passed a lot of gas and stool through the vagina. So surgery was not done and now they think the Remicade should be done again and because it might have been slowly working. But I don't want to take Remicade again if I have to go through the side effect that I had before. My doctor had also recommended that I could try Humira if Remicade doesn't work. So after hearing your experience with Humira, I am very hopeful. Thank you so much for sharing your story. I really needed to know I wasn't alone. I thought I was!

FPO nadiaetman
Joined May 29, 2009

Fri, May 08, 2009 12:00 AM

 Reply posted for mhl3610.

Yes, I too notice swelling of my fistula(s) during my cycle.
I have read many articles that this happens.
I had two fistulas in the anal area and one of them broke through and is also in the female area too.
I went on Humira June 08 and one fistula is completely healed.  The other (the one that broke through) is now tolerable, but I don't think it will ever heal as it flares up every month during my cycle.

The only other medication I have been on is Asacol and I have been on that since my diagnosis in 1997.  And of course the antibiotic during real bad fistula flare ups.  A surgeon who I have met with several times last year said it doesn't do any good to operate on fistuas because they do not heal.  So I took his advice to try the Humira and my quality of life has defienetly improved.  People always talk about the stinging at the injection site.  I have found that if you let the alchohol dry (from the alcohol wipe at the injection site for cleanliness) there is really no stinging at all.  The alcohol definetly stings if not dry!!!  I have had no side affects from the Humira.

I wish you and everyone else reading the best. 

FPO karen d
Joined May 22, 2008

Wed, April 29, 2009 12:00 AM

 Reply posted for mhl3610.

Hi! i had the exact same thing happen to me! i was 11 when i got diagnosed and am now 19. mine would also fill up with blood and leak as well.

i know that as i got older it got a lot better. i eventually went on birth control and that REALLY helped. after i was on that for a couple years and went off of it i have never had the problem again. also light therapy does wonders!!!=]

mine will still hurt every once and awhile, but it is pretty much closed now, due to going on birth control and giving it time to heal.

the doctors tried packing it with stuff 3 times but that never worked either....this was the only thing that has worked for me.

FPO suzanne
Joined Apr 29, 2009