Definate Dx and our first fistula...

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Regular Member

Date Joined Nov 2007
Total Posts : 99
   Posted 12/11/2007 11:39 AM (GMT -7)   
Hello all!  I checked in here a few weeks ago, when DH was tentatively Dx'd with Crohn's.  We had a consult last with with the GI, and he confirmed from the biopsies that it is CD.  He insists it's a mild case and believes he can get it under control with the Pentassa (DH was started on it right after colonoscopy the week before Thanksgiving).  He upped the dosage to 1000 mg 3x/day.
But in the meantime:  not long before t-giving, he felt what he described as a "marble" on the inside about 2 inches above anus; I felt this too.  Nothing visible on the outside of skin, not even a lump.  He suffered with it for about a week, then called GI who said "could be hemmy's, could be an abcess" and put him on suppositories for hemmy's.  Took the suppositories for 1 week, then it was our consult day.  Doc looks at DH's bum, right in the crack, there's like a bulging sack of skin that WAS NOT there before (I even said, "hey, that's new; that wasn't there before!).  Doc makes a frowny face says and says, "hmmmm...fistula maybe".  Gave him Cipro, Flagyl, and another type of suppository (the same med as the Penatassa).
OK, so now my question(s):  does this really sound like fistula?  Could it have been fistula all along?  Why wouldn't doc suspect that right away?  Dh is scared to death that he is going to have this thing in his crack for the rest of his live-long days.  Do fistulas go away of do they just shrink back inside and he will have this now forever?
I must say, this thing looks awfully painful....and it is right in his bottom crack....
Whew, I do have a way of blabbing on.  I am just wanting to help my sweetie any way that I can and I am trying to learn all that I can about CD and now about fistulas, YAY.
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!

Veteran Member

Date Joined Apr 2006
Total Posts : 733
   Posted 12/11/2007 12:02 PM (GMT -7)   
If it is a fistula, he needs to be on a medication to close it, as far as I know. Was this his GI who said "fistula maybe"? Fistulas are serious. Where would it be fistulating from? Is he on an Immunosuppresant? 6mp, Remicade, SOMETHING?! As soon I my ulcer started fistulating, I was put on Remicade IMMEDIATELY. It went from one inch deep to 1/4 inch within 3 months on Remicade! Of course, Remicade has potential side effects. Please don't tell me it was hubby's GI who said fistula maybe and acted like it was nothing. HORRIBLE! Get a new doctor if it was him! If not, got to the GI ASAP!

"A fistula is an abnormal tunnel connecting two body cavities (such as the rectum and the vagina) or a body cavity to the skin (like the rectum to the outside of the body). One way a fistula may form is from an abscess -- a pocket of pus in the body. The abscess may be constantly filling with body fluids such as stool or urine, which prevents healing. Eventually the fistula breaks through to the skin, another body cavity, or an organ. "
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 12/11/2007 12:12 PM (GMT -7)   
It very well could be a fistula. Is it painful? My fistula was much more painful as it was trying to break through the skin. Once it breaks through, depending on the location and how bad it can get irritated, the pain may lessen.Cipro and Flagyl are a good start to help if it is.

The problem, if it is a fistula, is that you need to get the disease under control. I have a hard time believing your husbands disease is "mild" if he's presenting with a fistula. He may have to try some more potent medictions, not necessarily the Biolgics right away (depending on your doctor), but maybe Imuran or 6MP.

Hopefully it will turn out to be something like an ingrown hair, if not, there are many treatment options and it doesn't mean he'll have one forever, but it could take a long time.

Keep us posted.
Crohn's Disease   

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 12/11/2007 12:23 PM (GMT -7)   
If it is a fistula it may be painful and I found with my fistula that pain was relieved once it opened up and was able to drain out. My fistula is on my belly right under my belly button. I have had CD for 20 years now and up until this year I was Dx with inflammatory CD which in the gut was just limited to my ileum now I have Fistulizing Crohn's-colitis. I was Dx with my first fistula while undergoing emergency resection when my ileum perforated. The fistula was intestine to intestine that they found once they opened me up. My colorectal surgeon said had I not had surgery the fistula I know have would be an abscess under my skin and be as painful as it was before it began draining. My doctor has exhausted all treatments to make it go away and none has worked therefore I am having a fistulagram tomorrow and a colonoscopy next week so my doc will have a better idea of where the fistula is stemming from as well as where the disease is active now so he will know what he needs to remove in my surgery to fix my fistula.

Remicade and Humira are some of the newer meds to help with fistulas. If it is a fistula it may be painful for DH (sorry dont know who that may be I may have missed a prior post saying that) What you may want to do is apply heat to the area that is bulging. if it is painful it may make it easier if it is able to drain. I had been using a heating pad on my belly for months since all 3 of my surgeries. like a pimple placing heat on the area brings it to a head so then it can be popped then that pain is releaved. My fistula is in my scarline therefore I have a weak area in the muscle wall the skin started turning a dark purplish color and after my shower I really noticed how much the area swelled up overnight after having the heating pad on my belly for that length of time.

After my shower I sat on th toilet knowing if I was able to open this thing up it was going to drain lots. I had a local abscess in that area that healed about 10 days before the abscess I had there before was from part of a suture that had grown into the skin so well that the doc was unable to remove it when he was taking out those sutures. He had me on pred post op so he kept the staples in for 2 weeks and sutures in for 4 weeks 2 of the regular sutures grew in so well he was unable to get them and informed me that they would make their way out. One I was able to get out that night then the other area swelled up and popped like apimple a few days later and in the hole I was able to remove the suture with tweezers.

The abscessed area that I was trying to open up I would have gone to the doc that day but it was a sunday and my doc was on vacation for the follwoing week. I made an appt with one of the otehr docs in the office but I was in fact able to open the area up gently after my shower. What i did was saw the flakey skin over the area and was able to peel it off like skin peels after a sunburn. I sat on the toilet with the roll of TP in front of me. I dried off then sat there gently tugging on the skin outside of the swollen area about 1 inch outside of the reddened area. the area opoed up and drained for a while. I pressed on the skin under the hole and all of the sides and bandaged it up as the doc had me do when it was the abscess from the suture. Later that night I went to change the bandage and that was the first time I saw feces come from the area. When the fistula starts to drain less I find I get more pain until it begins to drain more again. You may want to ask the doc about doing something to hep it to drain since if it si a fistula that DH has feces and pus sitting in a pocket causing infection
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

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