Friday, January 26, 2007
Thursday, January 11, 2007
What is a fistula? (Beware the gory details)
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.
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.
The History of Kat
In January 1992 at age 13 I was diagnosed with severe ulcerative colitis involving my entire large intestine. I ended up spent two full months in the hospital. I was so sick because I had been having rectal bleeding for months before I finally told my parents and doctor.
Why didn't I say anything? I can only say that I was terrified.
When I finally broke my silence my parents took me to the doctor who ordered bloodwork and an colonoscopy. My hemglobin was 4 and I was admitted to the hospital within a couple hours of the colonoscopy because of the severity of the disease in my intestine.
I spent about 2 weeks in Flagler Hospital in St. Augustine before my family doctor felt it was in my best interest to be admitted to Baptist Medical Center in Jacksonville where I could have access to pediatric gastroenterologists and surgeons. During the course of my hospital stays I was on an a clear liquid diet for over 2 weeks, I was on several types of medications including steroids and enemas. I began to have IVs infiltrate so often (almost every day) that once I was moved to Jacksonville I was immediately given a central line (an IV placed into the main vein in the chest). I had multiple colonoscopies, barium enemas, abdominal x-rays, CAT scans and ultrasounds. I also had mulple blood transfusions because my blood count was so low. We finally decided that surgery was my best option for a healthy and normal life.
The surgery I had was to remove my colon (yes, the whole thing) and have a reservoir formed out of a portion of my small intestine called a j-pouch. The techincal jargon is complete colectomy and ileal-anal anastamosis. The surgery was done in two stages. Stage one was done in March 1992 and consisted of removal of the colon and creation of the j-pouch. I was also given a temporary loop ileostomy to let the pouch heal before it took over its new function. A loop ileostomy is where a portion of the ileum (lower section of the small intestine) is brought through the abdominal wall and stiched to the surface. This small portion of intestine poking through the belly is called a stoma and waste exits the stoma (bypassing the normal route) and is collected in a special bag. Stage one surgery lasted just over 9 hours and I woke up in the pediatric ICU.
After recovering from surgery I was discharged from the hospital and was finally healthy enough to return to school.
Stage 2 was done 3 months later in June 1992 and consisted of reconnecting my intestine and j-pouch and closure of the temporary ileostomy. I only had to spend a week or so in the hospital and then was released.
My life was pretty normal after all this! I did take away a deep and abiding hatred of jell-o and I still don't do so well when it comes to having IV started
Life with j-pouch means having to go to the bathroom 6-8 times a day but I was able to do everything that I wanted and had no restrictions whatsoever. I went to highschool then college and even spent a semester in Northern Ireland. I met and married Shon :) and overall have had a very happy and healthy exsistence sans-colon.
Why didn't I say anything? I can only say that I was terrified.
When I finally broke my silence my parents took me to the doctor who ordered bloodwork and an colonoscopy. My hemglobin was 4 and I was admitted to the hospital within a couple hours of the colonoscopy because of the severity of the disease in my intestine.
I spent about 2 weeks in Flagler Hospital in St. Augustine before my family doctor felt it was in my best interest to be admitted to Baptist Medical Center in Jacksonville where I could have access to pediatric gastroenterologists and surgeons. During the course of my hospital stays I was on an a clear liquid diet for over 2 weeks, I was on several types of medications including steroids and enemas. I began to have IVs infiltrate so often (almost every day) that once I was moved to Jacksonville I was immediately given a central line (an IV placed into the main vein in the chest). I had multiple colonoscopies, barium enemas, abdominal x-rays, CAT scans and ultrasounds. I also had mulple blood transfusions because my blood count was so low. We finally decided that surgery was my best option for a healthy and normal life.
The surgery I had was to remove my colon (yes, the whole thing) and have a reservoir formed out of a portion of my small intestine called a j-pouch. The techincal jargon is complete colectomy and ileal-anal anastamosis. The surgery was done in two stages. Stage one was done in March 1992 and consisted of removal of the colon and creation of the j-pouch. I was also given a temporary loop ileostomy to let the pouch heal before it took over its new function. A loop ileostomy is where a portion of the ileum (lower section of the small intestine) is brought through the abdominal wall and stiched to the surface. This small portion of intestine poking through the belly is called a stoma and waste exits the stoma (bypassing the normal route) and is collected in a special bag. Stage one surgery lasted just over 9 hours and I woke up in the pediatric ICU.
After recovering from surgery I was discharged from the hospital and was finally healthy enough to return to school.
Stage 2 was done 3 months later in June 1992 and consisted of reconnecting my intestine and j-pouch and closure of the temporary ileostomy. I only had to spend a week or so in the hospital and then was released.
My life was pretty normal after all this! I did take away a deep and abiding hatred of jell-o and I still don't do so well when it comes to having IV started
Life with j-pouch means having to go to the bathroom 6-8 times a day but I was able to do everything that I wanted and had no restrictions whatsoever. I went to highschool then college and even spent a semester in Northern Ireland. I met and married Shon :) and overall have had a very happy and healthy exsistence sans-colon.
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