I had my picc line pulled tuesday of last week. I ended up with picc line sepsis so now my colorectal surgeon has me just eating a low residue diet since the tpn was doing exactly what the food was except for the amount of drainage from it. The fistula reared its ugly self on September 16. At times it looks like it is almost healed hardly putting any drainage out then it begins to look like a small blister is forming at the site then that blister like area grows and to the doc it appears to be mucosa and it looks like a mini stoma. the output at this point increases then the mucosa goes back in and the fistula looks like a slice in the skin again since it becomes flush against the skin. It keeps going back and forth between these cycles which my doc has never seen mucosa show then dissapear before. From the type and viscosity of the drainage he assumes that the fistula is from the large intestine especially since when I was still on Pentasa the beads from it were coming out of the fistula...to remind you it is an enterocutanous fistula right along my scar from my resection surgeries and right under the belly button. He has never seen a largeintestine fistula show mucosa before nor has he known a lg intestine enterocutanous fistula to not heal on its own. I have a colonoscopy set up for December 20th I will see my GI on the 21st (he will be doing the scope the day before and they are doing it at the hospital since I am so tolerant of pain meds etc so I am getting general anesthesia). My colorectal surgeon is going to set up a fistulagram to see where exactly the fistula is coming from and to see if it is distal or proximal and how far in cm as well from the skin surface. He said he wants that to happen close to when I have the scope I guess he calls the hospital to the radiologist and then they call me to set it up.
Since it isnt closing on its own he knows for a fact that he is going to have to go and do another surgery on me to remove the fistula as well as any other diseased area so it will be more like another resection. Here is my question when the fistula starts to get smaller and put out less drainage my abdomen pain increases a lot. the pain is on the left side to the point where the 50mcg/hr Fentanyl patch as well as 4mg Dilaudid every 4 hours for breakthrough pain isnt cutting it. Before the drainage was so bad that this huge bandage I have on was leaking through so I was changing it a few times a day...I am using an ABD pad, those super fluff gauze, regular gauze, toppper gauze and all of it on my belly makes me look pregnant...not to mention the additional belly swelling. I find that when the drainage is less the swelling of my belly increases as well and my appetite goes down. The doctor probed the fistula with the cotton tipped applicator and after he does that blood just runs down my belly from it.
I met with the stoma / wound care nurse at his office as well this past week and she tried to help with applying an ostomy appliance over the fistula area to collect the drainage since my skin is so raw that it bleeds when i try cleaning it. I also have a bad yeast infection on my skin from the feces draining on it. The 100 mg diflucan was not taking care of the yeast infection so he scripted me the 200mg and the nurse has me using the miconozol powder on the area and putting no sting skin prep over the powder so it will stay on the area. Needless to say even with building up the area under the fistula since under it is like a valley from the scar line the fistula drainage went right around and ran down my belly and not into the bag. I tried the ekin seals and the coloplast molding strips then even tried to flatten the area over the moldable stuff with the paste to make it a little more even. Again no luck it leaked right around it even was using a 1 piece so the flangee area was easier to bend in the center to make it fit in the "valley" area better. I dont know what I did different that 1 time I got 1 of the hollister wound collection bag to stick and work, I tried that same one again (a few times actually) and no luck. I figure the calmaseptic over the red area is helping and putting desitin over the other areas where feces gets but isnt red yet works okay for now too but I am dreading how it will act the day of my colonoscopy prep.
Any tips for the drainage I will have in mid-late december while prepping for my scope?
Also does anyone else have the same issues with increased pain with decreased drainage of the fistula? Once it begins to drain more again the pain decreases.
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