Prolonged fistula problem - what to do?

Good Afternoon all!!!

I have been reading and reading while I lay in the tub.....I have learned so much from this site, its advice and members are awesome. Now I am asking for some advice on how I should proceed.
In Jan 2009 I started dropping wait, severe diarrhea, vomiting, had a abcess that blew and Voila my first and only Chronic perianul Fistula. Sept. of that year biopsies were done(by a general surgeon) and it was determined I had CD. Pentasa was prescribed.Have a VERY difficult time with the fistula and diarrhea over the past 3 years.
2010 I dropped a bunch of weight again. Was admitted into ER and I finally got a GI who did numerous coloscopies and pronounced me CD free. Still had diarrhea, still had major draining from fistula which now included feces draining from it. This GI basically gave up on me, refused to take my calls and later even calls from my family doctor. It was then that my doctor called a colectoral surgeon who operated on the fistula cleaning it out. He did an "exploritory" and found that the fistula is wrapped around my sphincter. Flagyl & Cypro have been my go to drugs over the past 3 years.
Fast forward to 2012 the surgeon has done 7 surgeries on this fistula (everything from drains, setons, lift procedures etc). They work for a while...then clog, and we move on to the next one. It was in 2012 I finally got in to see another GI. He is working with the surgeon. This GI has done colonoscopies and I appear to be CD free. He "thinks" I may have crohn's but only in my anal area. He said I am a hard case to prove because he cannot biopsy my sphincter since I am not ready to become incontinent. I have not lost weight for over a year (even gained weight) I have been to dieticians and know what I can and cannot eat. I was put on Imuran and had a horrible reaction to it. My kidneys, liver, gall bladder were all affected. On Wednesday I had a cutting seton put in. BLECH. I feel so sore. Next Wednesday I go to see GI and we will be discussing remicade. Now since Wednesday I am having severe diarrhea too. Not fun with the open wound....
I was hoping to get some wordly advice, what you think, suggestions on where to turn, do you think GI is on right track?.....I'm so sick of this thing. My body and mind are so very tired. Help.

Post Edited By Moderator (Ides) : 3/10/2013 5:41:09 PM (GMT-6)

Thank you!

Have you ever had Prometheus Serology 7 blood work done? It maybe a good idea to talk to your GI about it – it’s not a 100% accurate but in combination with other symptoms and tests, this may provide a better diagnosis. Also, did you try a combination of Cypro and/or Flagyl? Some people have had good results in healing their fistulas with these antibiotics. How about biologics – Remicade is the big gut in closing fistulas and  I know someone on Humira that had good results.

I was diagnosed with fistulizing CD in the rectum in 2007 and had two massive rectal fistulas that surfaced about an inch from my anos.  I also had setons installed to help draining.  My GI wanted that I start remacade but since I was not having any other symtoms from my CD other then the fistulas, I opted to start the SCD diet rather then turn off mu immune system.  Within 8 months of starting the diet,  both fistulas were healed up completely and the setons removed.  I was also taking pentassa at the same time.

GI said he has never in all his career seen fistulas as large as mine heal with only pentassa.  I never told him I was on the SCD diet.  Now was it the SCD diet or the pentassa or the combination of both that healed me, I guess I will never know, but to this day, I have not had a symptom or fistula and I am still on the diet and taking the pentassa. 

Read the book "breaking the vicious cycle" you have nothing to loose by trying and all to gain if it works for you. 

Post Edited (NY-Sooner) : 3/11/2013 10:31:20 AM (GMT-6)

The SCD diet is not an easy diet to follow , but once you get into it , it becomes second nature.  You have to learn how to read labels on foods and you have to learn ho w to cook.  I make all my ouwn bread and cookies from almond flour and I make my own yogurt.

 The whole theory behind the diet is that CD is caused by an out of balance of bacteria in your gut and with the diet, you try to starve out the bad bacteria by eliminating there food source wihich is carbs and sugar, and you then repopulate your gut with good bacteria by eating home made yogurt fermented for 24 hours. YOU CAN NOT USE store bought yogurt because most have sugar added,  and all are not fermented long enough to eliminate the lactose. Store bought yogurt just adds food for the bad bacteria. 

  The secret to getting this diet to work is strict 100% compliance without any cheating.  If you don't eliminate all the bad foods, and you just pick and choose what you want to eat, you will waste your time and the diet will not work for you. Dedication is the key to success here.

Also, it does not work over night. I was on the diet for 3 months before I started to see my fistulas starting to heal.  Once they started to heal, it was no stoping them and by 8 months, both were gone and have never returned.  A side effect of the diet is chloresteral.  My chloresteral went from 250 to 160 and triglycerides went from 370 to 80 and I feel healther then ever.