- Joined
- Nov 4, 2012
- Messages
- 47
Hi All,
I'm a 43 year old male who has CD since the age of 10. Over the years, I have had 3 resections in the ileum and small intestine. Always in the same location. First one at the age of 12, then 24 and 30. A few years after the 3rd surgery, I started to develop perianal fistulas which required drainage and setons. I still have my initial seton. Others have come and gone.
I have taken a number of different medications: Prednisone, Imuran, Asacol, Cholestyramine, Remicade and Humira. I took Imuran for a number of years in my teens and stopped at the recommendation of my doctors. It was discovered in my 30s that the Imuran caused nodular regenerative hyperplasia in my liver which has since required me to take Nadolol. I tried Remicade, but that seemed to make things worse and this was discontinued after the initial dose.
For the past 3 years, I have been on Humira. And I can honestly say that this has been a fantastic drug for me. It has given me energy and my entire colon is very clean.
Less than a year ago, I started to develop another fistula near the one with the still installed seton. My surgeon prescribed me Cipro, and Flagyl which I took on and off for over a couple of months. At times it seemed like the meds could stop the new abscess, but unfortunately, it grew and required another seton placement to drain it. This worked briefly. It eventually filled up again, but this time there was a gelatinous substance found inside.
In the past few weeks, I have multiple CT and Pet-CT scans along with a biopsy of the fistula. I learned last Tuesday that the biopsy is cancerous. The initial diagnosis is Mucinous Adenocarcinoma. I have spoken with a few doctors who have all mentioned that this is very rare. The cancer is inside the fistula and not in the rectum or colon. The good news is that this is localized to this one spot. The bad news is that I will probably need treatment, surgery and possible permeant colostomy.
I am meeting with my Oncologist for the first time this upcoming week and I'm also schedule to have an Colonoscopy the day after. I'm optimistic that this will be clean. I won't deny that I am scared about all of this, but I am glad that I have found a forum like this. Odd as it might seem, it's been a joy to read the posts on this site. People are very optimistic and strong.
Thank you to all,
Matt
I'm a 43 year old male who has CD since the age of 10. Over the years, I have had 3 resections in the ileum and small intestine. Always in the same location. First one at the age of 12, then 24 and 30. A few years after the 3rd surgery, I started to develop perianal fistulas which required drainage and setons. I still have my initial seton. Others have come and gone.
I have taken a number of different medications: Prednisone, Imuran, Asacol, Cholestyramine, Remicade and Humira. I took Imuran for a number of years in my teens and stopped at the recommendation of my doctors. It was discovered in my 30s that the Imuran caused nodular regenerative hyperplasia in my liver which has since required me to take Nadolol. I tried Remicade, but that seemed to make things worse and this was discontinued after the initial dose.
For the past 3 years, I have been on Humira. And I can honestly say that this has been a fantastic drug for me. It has given me energy and my entire colon is very clean.
Less than a year ago, I started to develop another fistula near the one with the still installed seton. My surgeon prescribed me Cipro, and Flagyl which I took on and off for over a couple of months. At times it seemed like the meds could stop the new abscess, but unfortunately, it grew and required another seton placement to drain it. This worked briefly. It eventually filled up again, but this time there was a gelatinous substance found inside.
In the past few weeks, I have multiple CT and Pet-CT scans along with a biopsy of the fistula. I learned last Tuesday that the biopsy is cancerous. The initial diagnosis is Mucinous Adenocarcinoma. I have spoken with a few doctors who have all mentioned that this is very rare. The cancer is inside the fistula and not in the rectum or colon. The good news is that this is localized to this one spot. The bad news is that I will probably need treatment, surgery and possible permeant colostomy.
I am meeting with my Oncologist for the first time this upcoming week and I'm also schedule to have an Colonoscopy the day after. I'm optimistic that this will be clean. I won't deny that I am scared about all of this, but I am glad that I have found a forum like this. Odd as it might seem, it's been a joy to read the posts on this site. People are very optimistic and strong.
Thank you to all,
Matt
