fistula experience

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Irish Red
Regular Member

Date Joined Nov 2007
Total Posts : 54
   Posted Today 5:59 PM (GMT -7)   

These are the times I am glad my real name is not disclosed.

I have a fistula located between the anus and vagina area which is starting to bother me.  I just went to a walk in clinic this weekend because of severe tenderness during intercourse.  As it turns out I think I am developing another fistula in the vagina region. My husband and I are trying to have our first child and we have not been successful.  Now it hurts when ever we have intercourse.  The Dr. put me on Cipro XL until I can see my specialist. From previous experience with my other fistula surgery is a complicated issue due to it's location, I can well imagine that this new one would be even more complicated.  I was put on remicade awhile ago due to the first fistula and it seemed to work.  Anyway are there any females out there with Crohn's who have experienced something similar and if they have what was the solution in the end.  I would like to be as proactive as possible because we really would like to have children.

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.


"Life is like a box of chocolates you never know what your going to get inside" 

Everyone knows that quote... how true how true.

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted Today 7:36 PM (GMT -7)   
I am sorry you are going through this.  I have not had a fistula but am interested in the questions surrounding Crohn's and fertility and the problems that can arise, either naturally or through medicine we take, etc.  BTW I was on Cipro for a flare a few months back, I did not like taking it but it seems to be a very effective antibiotic.  I know it does seem bad enough to deal with all the pain and embarrassment of Crohn's to begin with, never mind all the OTHER random and very personal issues that seem to come up along with it.  :) Good luck! 

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted Today 9:28 PM (GMT -7)   
Well, I am not trying to get pregnant, but I can tell you that I have a fistula opening right near the vaginal opening. Intercourse can be painful, if not gentle. I was single when I was first cut (have since had the setons removed for the Prochymal trial) so I didn't try to have sex for months after the incision. The most recent cut (the other closed up, or is trying to heal, the fistula re-routed itself) was in mid-June. Careful sex was fine, but anything rough hurts for a while after. I wish I had more advice! best of luck with the conceiving!

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 12/18/2007 11:22 AM (GMT -7)   
I have not had a fistula in that location I have had internal ones that went from intestine to intestine and the one i have now is enterocutaneous where it opens right under my belly button. I would like children as well. Back in February I got my husbandsValentines Gift on the 10th and gave it to him early since it was a computer part he wanted and he typically doesnt go online during the week. So since I gave him taht he gave me my gift early too it was him telling me that he feels we are ready now as far as me trying to get off certain meds that are amitryptaline for my migraine prevention is a med you CANNOT be on and I was on 100 mg. Later that night I felt awful and checked my temp and I had a fever. I was tapering off pred at the time had 4 days left so I was watching it closely since I go to the doc or walk in clinic ASAP if it hits 102. The next morning was my morning to take care of the boarding animals at the animal hosptal I worked at...I went to my parents house following that to drop off my dogs script for her heart meds. I took my temp there and it had hit the 102 mark so my mom isisted on taking me to the walk in or driving my that time I smoked and my family didnt know that I started again or that my husband had started again.

I went on my own to the walk in ....I hadnt had any ciggs that day knowing I was goign to my parents etc...I never would smoke around family even when they knew so even when I would go on vacations with them when I was 17, 18 etc I wouldnt smoke at all the whole time. My mom decided to show up anyway and the walk in couldnt find anything so they sent me by rescue to the ER...they found a perforation in my ileum. I had surgery that is when my first fistula which was the intestine to intestine one was discovered it did not show up in the CT. One week later 1/3 of my colon didnt wake up and I had molre surgery. I had an ostomy at that time with more complications following. I had it reversed in June. Was doing well then started having pain expressed my concern to my surgeon and to my GI my surgeon felt as tho it was just healing so he called ant told my GI that. That pain continued until in mid september the fistula broke through....then that pain I had from July finally lessened a bit. It is still draining all though it picks up then slows down again. My husband is grossed out by all medical stuff and cant even stand when my dressing over the fistula is showing even if I just placed it on a few minutes before so even though our 2nd anniversarry was oct 07 well lets just say kids are very far off I am supposed to have another surgery to fix this fistula I am going thru the fistulagram...that was last week...and my colonoscopy is this thursday.

He is so afraid to break me that even when I was given the okay for intercourse he wont touch me he is afraid to break me. Now he fears him being 200 poundsthat he will make the fistula start draining a whole lot more if we do have intercourse. With this whole vomiting /nausea thing family has asked me if I am pregnant I told them well I would be way overdue and majorly skinny if I was since it has been almost a year now
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

Regular Member

Date Joined Jul 2007
Total Posts : 172
   Posted 12/18/2007 6:29 PM (GMT -7)   
Hi all--I'm typically on the ulcerative colitis board, but I have been "lurking" on this board since I was told by my GI due to my mouth sores I may have chrones-colitis. My colonoscopy in March didn't reveal that, though. During my last flare in August, I had the pain, bleeding and tenderness between my vagina and anus and it seemed to be like a 'sac' on the outside of my body--I had wondered if it was a skin tag.  I didn't have a clue and was scared to say anything. I am so glad, Irish Red, that you've opened up about it, b/c I was not so sure how to broach the subject and didn't know what it was and how to really talk about it!

I am interested in the responses. Even Mayoclinc website talks of fistulas and abcesses (which mine sounds more like) but they don't address specific treatments for that part of chrones.

Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!

Post Edited (AlabamaBabs) : 12/18/2007 6:34:03 PM (GMT-7)

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 12/19/2007 6:47 PM (GMT -7)   
I wasn't diagnosed with Crohn's until I was on my 6th surgery for the same fistula. My fistula caused an abscess that went almost 360 degrees around my anus, so not exactly the same place as yours, but similar enough that I can sympathize. The setons they stuck in me poked directly forward and made intercourse impossible for almost a year unless I put a bandaid over the tube so it wouldn't poke my partner in the you-know-whats. How tedious, right? Argh.

Anyways, I found IMMEDIATE fistula relief with Remicade. My doc started me on infusions every 4 weeks, and the drainage stopped within three months. I was astounded. I had been on every other nasty crohnie med, all of which I have terrible reactions to. Except the Remicade. It healed up my fistula, thus drying up the abscess, and I got to go back to having a normal life. They left the setons in for almost 6 months, "as a precaution"... sometimes I think the docs just have no idea how invasive and all-consuming fistulas and drainage tubes sticking out of your privates can be! I continued getting the Remicade every 4 weeks for a little over a year. I made the personal decision at that point to try to "supplement" my treatments with some things of my own choosing. Everybody is inclined toward different routes - I personally went for the digestive enzymes and probiotics. With the addition of these to my diet, and the fact that I gave the fistula a good long time to go away - I can now get my Remicade every 16 weeks without any trouble. In fact, I think I might get the Remicade more out of fear of the fistula's return than any other reason.

I want to have kids soon myself, and I've done a lot of research on Remicade and pregnancy, and I've read a lot of personal experiences on this board, and it is all very encouraging. I fully plan on continuing my treatments while pregnant. I will, of course, discuss with my doctors the best way to space them out, but I will not go without.

It's a tough personal choice, I know. But maybe my story will help you come up with some questions for your doc, or at least let you know you're not alone!

Irish Red
Regular Member

Date Joined Nov 2007
Total Posts : 54
   Posted 1/1/2008 2:31 PM (GMT -7)   
Thank you everyone. The information posted has been very helpful and I will continue to research my options. Things are getting better in some ways however I am starting to experience an increase in blood loss so I still have a way to go until things are smoothed out. We really want kids but we would like them to be healthy and I would like to be healthy or at least stable before we start. I change my mind on this daily... sometimes I say screw it lets just try it anyway.

For those thinking of giving birth naturally when you have a fistula. I have read recently that it is highly recommended to have C section as giving birth may cause another fistula or make the first one worse.

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.


"Life is like a box of chocolates you never know what your going to get inside" 

Everyone knows that quote... how true how true.

New Member

Date Joined Feb 2003
Total Posts : 10
   Posted 1/1/2008 8:21 PM (GMT -7)   
I had a vaginal fistula.. and I went on remicade... After about 4 weeks the fistula disappeared and has been gone ever since.. that was four years ago.  During the last seven years, I tried and tried to conceive.. doing fertility meds, and even IVF with no luck... I was severely underweight... Remicade put me in full remission and I gained weight successfully and I conceived a miracle baby with no medical intervention.. He is now 6 months old and I still feel that I am in remission but I am dealing with Constipation now instead of Diarrhea...
Best of luck

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 1/1/2008 8:51 PM (GMT -7)   
jkelley ur so lucky, i went on remicade a few years ago in college and went into remission. However, i developed a staph infection and they took me off, they tried to start me off again last year and it doestnt seem to be doing me any good. So i'm starting Humira this week.

Irish red, I have a rv fistula (recto vaginal) which causes stool to come out of the wrong place. This totally freaked me out at first, the doc said it was to be expected, and since then it doesnt frighten me as much as it is embarassing and debilitating at times.

I'm only 25 and due to my crohns (and religious reasons) am very sexually inexperienced (dont tell lol) but the things i have experienced have been very uncomfortable and i've found that this is probably due to my fistula and perianal issues which are many.

I too wanted to start a family eventually and fear the chances of that are nil. I read somewhere online that most crohns patients are able to reproduce but usually don't due to the pain and discomfort associated with sex. This was discouraging to me. I'm somewhat jealous of those whose fistulas closed with remicade, when i was on it i didnt have the fistula and now it doesnt work for me! I was hoping that humira would close it for me, but now its too late for me to even see.

Because of this darn thing and its intrusion on my life, I think ive decided to go ahead and get an ileostomy, b/c my doc says my fistulas need time to heal and the only way is for me to stop going the normal way.

I wish you the best of luck and my prayers are with you. I'll be checking the board to see what other advice you get, b/c this topic im sure is important to many of us females dealing with this issue.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!

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