I have had Crohns Dz for 30 years (since I was 30 yo).
I have had many surgeries and no longer have any Colon left. My main problem with crohns is Fistulas. I have a permanent ileostomy, due to a rectal vaginal fistula. The rectal vaginal fistula was repaired in Dec of 2009 and since then have formed 3 abdominal fistulas that have connected to my abdominal wall. Some were easy to handle as they just oozed, but now I have one that is very active and is putting out approx. 30 ml o (an ounce) or more every hour. It is very difficult to manage, as it is very close to my ileostomy, and I have had to change my ileostomy aparatus several times per day. I have tried to attach another ileostomy bag to the fistula site, but it leaks most of the time. Any suggestions?
I have recently had intermittent pain and nausea with flare ups. I have found that vitamin B6 (over the counter) helps the most with nausea. But I usually have to take narcotic meds for the pain.
Sometimes I feel like "this is no way to live", but with the support of my family and friends, I have realized that I am blessed, and that others have worse conditions that I do. I guess that we who have Crohns just have to keep plodding along and enjoy each healthy day that we have.
Thank you for the opportunity to talk about this.
I have had many surgeries and no longer have any Colon left. My main problem with crohns is Fistulas. I have a permanent ileostomy, due to a rectal vaginal fistula. The rectal vaginal fistula was repaired in Dec of 2009 and since then have formed 3 abdominal fistulas that have connected to my abdominal wall. Some were easy to handle as they just oozed, but now I have one that is very active and is putting out approx. 30 ml o (an ounce) or more every hour. It is very difficult to manage, as it is very close to my ileostomy, and I have had to change my ileostomy aparatus several times per day. I have tried to attach another ileostomy bag to the fistula site, but it leaks most of the time. Any suggestions?
I have recently had intermittent pain and nausea with flare ups. I have found that vitamin B6 (over the counter) helps the most with nausea. But I usually have to take narcotic meds for the pain.
Sometimes I feel like "this is no way to live", but with the support of my family and friends, I have realized that I am blessed, and that others have worse conditions that I do. I guess that we who have Crohns just have to keep plodding along and enjoy each healthy day that we have.
Thank you for the opportunity to talk about this.
