The question on every body's lips. What is the fistula thing she keeps talking about and why is it such a problem?
If you're squeamish I beg you to stop reading now.
A fistula is an abnormal tunnel or connection between two organs or between an organ and the surface of the skin. The most common types of fistulas are perianal fistulas that connect either the colon or rectum and the surface usually just next to the anal opening. There are several causes for fistulas but one of the biggest is perianal crohns disease. I have a very specific type of fistula called a pouch-vaginal fistula. I don't have much of a rectum anymore, most of it was removed with my colon and I was left with what is referred to as a rectal cuff (only 1-2 cm compared with a regular rectum which is the 12 cm range). Pouch-vaginal fistulas are rare and occur in only about 2-9% of women with j-pouch and are either the cause of surgical error (if they occur within months of surgery) or disease (if they occur years later).
The primary symptom of a fistula is passage of stool or gas through the fistula tract. In the beggining it was painless but as the fistula began to get larger and the amount of stool that came through grew it became more and more debilitating.
I went to the Cleveland Clinic in August 2005 before things got bad. I had done my research on these types of fistulas and knew from the start there wasn't much that could be done. It was then I met my surgeon Dr Feza Remzi (best surgeon on earth) who did an exam under anesthesia so he could assess the condition of my j-pouch and location of the fistula. It was also at that point that I was diagnosed with crohn's disease of the pouch and was set up with a gastroenterologist who specializes in j-pouches Dr Bo Shen. Before having surgery to try and repair the fistula I decided to try medical therapy. I was on several combinations of medications including Cipro (antibiotic) Entocort (low-dose steroid) Tinidizole and 6-mercaptopurine (immunomodulator). None of these drugs were able to close the fistula and by the end of December I was so miserable with the fistula I was ready for surgery to relieve my suffering.
February 10, 2006 I had surgery to give me a diverting loop ileostomy so that stool could bypass the pouch giving me relief from drainage and a flap repair was done to try and close the fistula. From the very beginning Dr Remzi impressed upon me the unlikely chance of successfully repairing the fistula, but given my age and motivation to maintain some normalcy we both felt it was worth trying at least. The repair did not work because my rectal cuff and pouch are very diseased. Successful closure of pouch-vaginal fistulas resulting from crohn's disease is around 20% at 1 year. After we realized that repair failed I had multiple exams under anesthesia to assess the situation. Finally in August 2006 my surgeon felt my best shot at repair was a new method called Surgisis Anal Fistula Plug. It is a plug made of biomaterial - porcine submucosa (pig intestines!) Because genetically the pig is close to humans the material is supposed to plug the hole and then bond with the body's cells. It is fairly successful in closing regular perianal fistulas not associated with crohns disease. It did not close my fistula.
In November 2006 I once again met with my surgeon to discuss my options. He was very kind but also very frank (a trait I'm very grateful for). He said that a fistula repair would not work and the only way to end the draining and close the fistula would be to have a complete proectecomy (removal of the rectum and sewing shut anal opening). You may well ask why with the diverting ileostomy I would agree to have this done as it is possible sometime in the future the would discover a way to fix this. While stool doesn't enter my j-pouch anymore the bowel itself secretes mucous, and also because my pouch is diseased it bleeds. So, while I'm spared from the pain and debilitation of acidic stool passing through the fistula I get this nasty bloody mucous combo that cannot be controlled. I have lived with it for a year now and I'm sick and tired of it. Its disgusting, horrifying, embarrasing and the thought of living with it indefintely until "something comes along" is more than I can bear.
Though I was not taken by surprise the news was not less devestating. I had always maintained some hope that something surely would work for me because I was in the top hospital in the country for digestive diseases, with one of the top GI's and top colorectal surgeons, and after all I had been praying faithfully day in and day out for months and months and months. Surely God would give me a miracle.
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