fistula and remicade vs surgery

Dear Emmy,

I won't be much help as my husband always has the strictures and has had 3 successful surgeries for them.  I am sure someone will be along with some great insight.
Your in my prayers.
Kitt

Hi-

i have had a history of perianal crohn's including many rectal abscesses and fistulas(read my signature) so maybe I can answer some of your questions based on my experience.

1. Has anyone ever had one type of Crohns (stricturing) for several years that turned into another type (fistulizing)? I have only had rectal problems so I can't really answer this quest. From what I have read on these boards, this has happened to people as the disease progressed for some but everyone's case is so different.

2. Has anyone had a fistula that was able to be treated without requiring surgery? I have had constant surgeries including 4 different seton drains and a failed fistula plug. I was on remicade for 7 months and in that time, I got a new fistula and the 1st fistula did not close. I now have a drain through both and will probably be getting another plug in March.

3. Have you still been able to have vaginal deliveries of babies? My OB/GYN said no as did my surgeons and gastros but my disease is all rectal and the trauma that birth would cause to the area is not a risk they want me to take. Getting pregnant is another story. I have tried for 7 months and no luck. My Gastro said it was because of the constant infection but I am almost 37 so that may be why.

4. Has anyone ever had one and not developed them again?-everything I read says that they are not easily treatable and once you get them they are reoccuring. UGH!!! I have had several but again, my diease is all rectal. Remicade may be an option for you instead of surgery.

 

You should definitely ask your Dr. these questions. He/she may be able to give you some hopeful info.

I am currently seeing a surgeon at Mt. Sinai in NYC. I am very please with what she has done for me so far. I have 2 drains right now and in another 4-6 weeks, we will try the fistula plug surgery again. This time I am on remicade so she feels this will help. She will also do the rectal flap procedure( I stilll am not too sure I know what this is yet) but she feels the fact that is was not done  by my former surgeon was the reason my last plug failed along with the fact that only 1/2 of the fistula was plugged. Keep in mind that fistulas are very complex and there is so much that Drs. still do NOT know about them (even the best surgeons in the world). I have also learned from my colorectal surgeon that amny people who do not have IBD get fistulas. Who knew?!

Best of luck to you!

Try the remicade first!!    Remicade was not an option when i developed my first rectal fistula so I had to have a total rectal removal leaving me with a perminate colostomy.  My rectum was too far gone because of the fistulas.  Stools were passing into my vagina.  Big Mess!!  If remicade was around then I probably would of been able to save my rectum and just had a temporary colostomy put in until the fistulas healed.  After all these years i've been free of fistulas until 7 months ago.  They found one on a routine colonoscopy.  I was put on remicade - and after two treatments, my fistula was gone!!!  It is a miracle drug to close fistulas.  As a maintenance drug, I am having my doubts (but thats a whole different story).  If it were me, I would go for the remicade.  From one woman to another a colostomy sucks!!  Yes it has done wonders for me for my crohn's but mentally I will always have a problem with it.  Crohn's and my colostomy are not a very quite thing (if you know what i mean).  I would only resort to surgery if that was your last resort!!! 

As far as delivering babies vaginally--I don't know.  All 3 of my children were delivered c-section and I had all three before my colostomy.  I have had the colostomy for 12 years--1 year after the birth of my last child. 

Emmy...your story sounds familiar. I had terminal ileum CD with a resection in 1990. Nothing came up until about 2003 when I had a perianal fistula. I was shocked, upset, afraid it would affect childbearing and many other emotions. It was mostly the shock that everything was so good for 14 years then this.
Well, I have had much reassurance that children would not be a problem by many docs I trust and have seen many Cders with successful pregnancies both here and at my local meetings. Since I have passed the age when I am comfortable having kids (and other things), I am not going to be able to help you there past that.
As far as treatment, I only had a seton placed. Flagyl was closing the fistula, but I had the neurological reactions to it that some people have. I stopped flagyl and went to just Cipro and that wasn't really working. My doc at the time was a "non meds guy" if there were other options. We went with a simple seton and it worked wonderfully for me. I must say that I had "the best kind of fistula if you are going to have a fistula" according to the nurse at my surgeons office. She said that perianal were better than any other place and mine had very limited muscle involvement. I had the seton in for about a year and slowly the seton closed.
It has now been 3 years and I have not discovered a new fistula - however, that doesn't mean there is not one. My current GI really wants me on remicade because he believes it is better to maintain no problems status than wait for another problem. I understand his theory, but I am avoiding remicade for my own reasons. If I develop another fistula, I am going to consider imuran which my current GI says he has seen results in fistulas if the dose of imuran is high enough.
I hope it helps!!

p4h...the fistula closed around the seton. visited the surgeon every three weeks for a year to see if he needed to shorten the seton, but mostly it was closing on its own. Sorry you have so many setons...I hope they help you heal. I know how awkward one felt, but mostly it was self conscious worry. I am extremely thankful that I had such a good result from my setons.