Crohn's Disease fistula connected to sphincter muscle

Hi, I am new to this board..hello! I have Crohn's Disease and Lupus. I have a fistula on my right buttock from a previous peri-rectal previous ishio-rectal horseshoe shaped abscess..i have had surgery twice back in 2001 -6 weeks after a fistula has formed..detected by an MRI. The fistula goes from my right buttock and connects to the sphincter muscle about an inch in or so. Surgery can not be performed as they can not cut that muscle. The site is open and it drains..and it drains alot and sometimes wiping my anus and my fistula is the same thing. about a week and half a ago..1/4 of an inch up from the drainage hole..their was redness and swelling..that seemed to be coming from inside or from below exactly sitting right on the scar tissue (that back in 2001 was operated on)...three days later it fills up with pus. I can see the pus with a flashlight and a mirror...i sterilize a needle and poke it..it drains and i sit in a sitz bath...it does the same thing for the next two days..I end up going to the ER. They tell me they see a small divet there looks like an abscess and it seems superficial and to do the sitz baths and come back if more pus comes out. The next day late at night its filled up with pus...i do the sitz baths..i can actually squeeze out pus and blood...but their is something small and white...that seems to be under the skin..i can't get it out and I am ready to go back to the ER. I have called my GI doctor but don't have an app until Tuesday. I don't have a general surgeon and I am having trouble getting an app with one. Finally my husband says forget this..you need to use a needle again (i know u shouldn't do this---the er gave me a tetnus shot for fooling around with a sewing needle). So we disinfect it..i take the skin off..do you know what came out.......the small white sphere...from the mesalamine..i take Pentasa...and now after more pus came out..the pain is gone and i finally feel better...how in the world did that get caught up superficially in scar tissue 1/4 of an inch right up from the open fistula sight? I called the doctor on call and they told me..its impossible for it to get caught up in the skin and that it came from my GI tract..so is it possible for one fistula to branch out? I am super clean as we all must be those with fistula's..because you have to be careful....so did the fistula drain (these spheres come out from my fistula all the time) get caught up in scar tissue and cause a small infection or does it sound like my fistula has branched out? What is your opinion...because I really feel right now..like I am fighting my own battle with Crohn's....I don't feel like anyone is listening to me..i am depressed about being sick alot and I feel so frustrated. I am thinking about going on remicade but cause I have been told maybe this fistula can dry up...Please reply thank you for your time.

Hi Frogeleita! Welcome to the forum! There are several members of this board who have fistulas, so you certainly are not alone!

I started with a peri-rectal abscess with a fistula (rectum to perinium) that started high in the sphincter muscle. Surgery would leave me immediately incontinent. That abscess was opened and scraped out, and they placed a seton to keep the fistula open and draining. This helped a lot. Before getting the seton, the fistula would clog and I was always infected! I was on Flagyl and Levaquin and that helped, but the solution was the seton.

A year later, I get another abscess in the same spot. Turns out the fistula had branched. So I still have one whole in the sphincter, but now have two exits in the perimium. So now I have two nice, fashionable, fire-engine red setons.

I certainly can't diagnose you and I am not a doctor. From what you have described, it does sound like another abscess. I suggest you need to see a good colo-rectal surgeon who has experience with Crohn's disease (CD). While some general surgeons may have expereinece with CD, I strongly suggest you need to see a specialist. We CD people just don't heal the same as non-CD folks, and treatments are different too. CD is a chronic illness, and a specialist is needed. I suggest you ask the surgeon if a seton will help you (if they don't know what one is -- they don't have enough experience -- run!)

Also, please don't think that you caused this problem. Like you, when I got the second abscess I thought it was because I wasn't taking enough care of myself. My doctors made it very clear that I did nothing wrong, and there was nothing I could do to create an abscess or fistula. They are the result of an active disease process. So please take heart in this. I do think you need to talk to your doctor about medication. They put me immediately on Remicade (but I became allergic), then Humira (hives!), and now I've been on 6MP for a year and am doing very well!!

I suggest calling your doctor and asking him/her to help you get in to see a colo-rectal surgeon ASAP. They should be able to call and get you in to see one quickly. If it stops draining or you start to run a fever, I would go to the ER.

Please let us know how you are doing. Take care!

Hi Frogeleita!

I am glad you saw a colo-rectal surgeon! My surgeon did exactly the same thing -- exploratory to see what was happening. I woke up with a seton. Then he worked with my GI doc to get me on Remicade ASAP (it is very good at healing fistulas). I suggest you talk to him about getting on a med quickly to help speed healing. An antibiotic couldn't hurt either if there is infection. If all he does is place a seton, you shouldn't have much discomfort post-op at all. Maybe a day of two because of the poking and exploring they do, but really not much. Jts plan to take it easy for a couple of days.

As for removing the fistula now, that all depends on how high up in the sphincter it starts. If is is low, then they can do a fistulectomy (cutting the fistula open and letting it heal). But they may want to wait if the area is infected. You really need to trust their judgement on this one! Remember patience is what you need with a fistula and abscesses. If a fistulectomy is not possible, your surgeon can discuss other options (the type of options will depend on whether you have Crohn's or not).

As for living life with a seton -- for how ever long you have it -- it all depends on where it is located. I swimming and walking should be OK. I swim now and walk, but I always keep the guaze tucked in there so the seton doesn't rub my skin. As for intimacy with your husband, again I think it depends on the seton's location. There a a couple of people of this forum who have no problems, and others who can't. I think it just depends on if it hurts you or him. I personnaly would abstain and be cautious for quite a while. Remember the area is damaged by the abscess and fistula, and the tissue could be delicate. You don't want to undo the healing.

I suggest you recognize this whole episode of you life is just a "season". And seasons change. Here are great words to reflect upon from the book of Ecclesiastes --

"There is a time for everything, and a season for every activity under heaven:

a time to be born and a time to die, a time to plant and a time to uproot,

a time to kill and a time to heal, a time to tear down and a time to build,

a time to weep and a time to laugh, a time to mourn and a time to dance,

a time to scatter stones and a time to gather them, a time to embrace and a time to refrain,

a time to search and a time to give up, a time to keep and a time to throw away,

a time to tear and a time to mend, a time to be silent and a time to speak,

a time to love and a time to hate, a time for war and a time for peace."