I am going to be having surgery for my enterocutaneous fistula in January or February. I had a fistulagram this past week and having a colonoscopy Thursday. The colorectal surgeon is having these tests done first to deteremine what part of the intestine is flaring...my CD use to be limited to my ileum now from the fistulagram it appears as if it has moved to my large intestine. He wants to see how much he has to remove and how distal/proximal the fistula is. I have tried all other methods to heal it and Sx is the last option.
I use to be on Remicade back from 2001-2006 My first CD related Sx was in february 2007 then had 2 more after that one this year with complications after each of them. I was placed on Pentasa after my ostomy reversal hoping that would keep the CD from returning so fast, that was in late July my reversal was in late June. Unfortunatley I was already having severe pain on my L side when I was placed on it. That pain was later lessened once the fistula finally broke through the skin in Sept. When the pain began they docs felt as though it was just the post op pain still.
I started Humira initially it was for my joints since those have given me the most grief these 20 years that was why I was placed on remicade too. I had tried celebrex and otehrs like that and after 1 week I would flare so that was what got me on remicade. In later 2005 early 06 I started having bad reactions to the remicade during the infusion casuing me to have to prep with pred the day before and day of the infusion. My GI that I have now sent me to a RA doc to verify that the arthritis was CD related and not a diff typ;e also he wanted to verify that the RA doc felt Humira was my best option. I was also placed on Entocort back before my ileum perforated back in dec I think I was placed on it. My new GI also placed me on it when my joints were acting up he said usually when the joints flare it means the large colon is flaring...I thought that was odd being that my joints as stated above was always my biggest problem and the CD was never in my colon until this year after my surgeries.
I was placed on humira and was awaiting the authorization to go through and a cpl days later that was when my fistula came thru. The humira seemed to help but I was finding that the fistula drained more when I was getting close to my next injection. I was on the traditional CD dosing for a few3 months and just last month my doc increased the humira to 1 shot each week.
My surgeon finally saw how bad the fistua was and I went to him since my GI wanted my surgeon or my PCP to script
out pain meds since he didnt feel comfortable giving me any since I need the stronger pain meds since vicodin, darvocet, and percocet dont do a thing for me I need things like dilaudid and fentanyl. I was placed on ABs by my GI and had set up the appt with my surgeon so he could see the fistula since most times I would go to him it was not long after my humira inj so it didnt appear to be too bad. So 1 week after being on cipro it didnt do a thing so my surgeon had a picc line placed in me and I was on TPN...that didnt help either mucosa actually came above my skin...that had happened to me before it was minimasl drainage for a cpl days then it looked like a blister would appear near the
opening then the mucosa would pop out he had not seen that on me since it goes back in then out again. I had the picc pulled because it got infected and he determined Sx is what I need.
I would definitly use all other options to try to heal it first before Sx and if Sx is a must make sure you have all testing done that your doc and surgeon suggest
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