Hi Folks- I am new to this site, and to Crohn's forums in general, I guess I was skeptical about what kind of information/knowledge could be gained from this, since I was first diagnosed with Crohn's officially in 1999. After spending some time the past few weeks reading some of the personal stories and struggles, I was very impressed with this site and the quality of information available. Everyone here seems generally willing to share and help, and I feel fortunate to have found this site. So here is my story:
I believe the first symptoms appeared around 1991. I was getting rectal fissures, which I attributed to a job I did riding a bicycle for 40 hours a week during the summer. I had a couple of incidents of pain in my side that after some blood work, and having a high white blood cell count, was an undetermined ailment. The rectal fissures did not go away, even with repeated trips to the doctors who even tried to burn them with silver nitrate to get them to heal. Eventually they found a pilonidal cyst that was draining and they felt kept me fissures from healing. So my first surgery was to remove the cyst.
The cyst never really healed for several years, so I had this open wound just inside my butt crack(so not visible). For the better part of 1991 - 1998 things slowly went down hill, although I don't remember that much during those years as I was busy going to college and getting my first career job. I know that my bm's were getting looser and looser, and the cramps, bloating that one normally has I always seemed to attribute to something I ate.
In 1999 it reached a peak where I lost nearly 40 pounds in a few months, was working all day, and sitting on the couch all night, due to being completely exhausted. I ate very little and had sores on my tongue and mouth that made it difficult to swallow salty foods. When I worked I had to be near a bathroom. I finally decided enough was enough and saw a family doctor specifically about the diahrea and urges to go. He sent me to a surgeon for a colonoscopy who misdiagnosed me with UC. With the combination of prednisone and sulfa things improved, however this was the band aid approach.
After flaring I was then sent to my current Gastroenterologist. After another colonoscopy I now was diagnosed properly with Crohns. Initially my GI put me on immuran after an infusion of Remicade. This combination worked wonders and kept me in remission for a few years. Actually longer however my colon decided that the inflammation, healing, and inflammation was too much, actually narrowing my colon to where food was having trouble passing. I would get severe cramps and generally vomit my food that would not pass.
After another colonoscopy, upper and lower GI. (BTW do not ever, I mean ever have a lower GI if you don't have to especially if you have fissures. Very painful.) It was determined that I needed surgery to remove the narrowed section.
Summer 2003 had the resection surgery, which was longer than expected, as they found crohn's randomly throughout my colon. After seing this the surgeon took most of my colon, except for about 8 inches. Enough to resection. Spent a wek in the hospital. The goal was to remove all signs of crohn's to heal me for good.
Guess what, within a year I was back to the GI. Flaring again. The plan since 2004 has been Infusion with Remicade every 8 weeks, and up until April I took Immuran. I had been good for the past few years until I was taken off immuran, had my first flare. Was then put on Prednisone to get me to my next infusion. Now they have been upping the dosage of Remicade each time to keep me well.
Naturally with an 8" colon my bm's are never really solid, as very little water get's absorbed. So diahrea has been the norm for me for years. Fissures still, yes. However during all of this I have been able to eat what I want, with few exceptions. Corn, peas and similar raw vegetables still get stuck, so I avoid them.
I am hoping the Remicade continues to work for me, however am concerned that I can't be on it forever, and am only 36 years old. Will I have to get a bag at some point and have the rest of what's left taken? I am supposed to see the GI in the next two months to discuss the future. That should be interesting.....
Please feel free to share your thoughts on my situation, it's nice to know I am among friends here.
I believe the first symptoms appeared around 1991. I was getting rectal fissures, which I attributed to a job I did riding a bicycle for 40 hours a week during the summer. I had a couple of incidents of pain in my side that after some blood work, and having a high white blood cell count, was an undetermined ailment. The rectal fissures did not go away, even with repeated trips to the doctors who even tried to burn them with silver nitrate to get them to heal. Eventually they found a pilonidal cyst that was draining and they felt kept me fissures from healing. So my first surgery was to remove the cyst.
The cyst never really healed for several years, so I had this open wound just inside my butt crack(so not visible). For the better part of 1991 - 1998 things slowly went down hill, although I don't remember that much during those years as I was busy going to college and getting my first career job. I know that my bm's were getting looser and looser, and the cramps, bloating that one normally has I always seemed to attribute to something I ate.
In 1999 it reached a peak where I lost nearly 40 pounds in a few months, was working all day, and sitting on the couch all night, due to being completely exhausted. I ate very little and had sores on my tongue and mouth that made it difficult to swallow salty foods. When I worked I had to be near a bathroom. I finally decided enough was enough and saw a family doctor specifically about the diahrea and urges to go. He sent me to a surgeon for a colonoscopy who misdiagnosed me with UC. With the combination of prednisone and sulfa things improved, however this was the band aid approach.
After flaring I was then sent to my current Gastroenterologist. After another colonoscopy I now was diagnosed properly with Crohns. Initially my GI put me on immuran after an infusion of Remicade. This combination worked wonders and kept me in remission for a few years. Actually longer however my colon decided that the inflammation, healing, and inflammation was too much, actually narrowing my colon to where food was having trouble passing. I would get severe cramps and generally vomit my food that would not pass.
After another colonoscopy, upper and lower GI. (BTW do not ever, I mean ever have a lower GI if you don't have to especially if you have fissures. Very painful.) It was determined that I needed surgery to remove the narrowed section.
Summer 2003 had the resection surgery, which was longer than expected, as they found crohn's randomly throughout my colon. After seing this the surgeon took most of my colon, except for about 8 inches. Enough to resection. Spent a wek in the hospital. The goal was to remove all signs of crohn's to heal me for good.
Guess what, within a year I was back to the GI. Flaring again. The plan since 2004 has been Infusion with Remicade every 8 weeks, and up until April I took Immuran. I had been good for the past few years until I was taken off immuran, had my first flare. Was then put on Prednisone to get me to my next infusion. Now they have been upping the dosage of Remicade each time to keep me well.
Naturally with an 8" colon my bm's are never really solid, as very little water get's absorbed. So diahrea has been the norm for me for years. Fissures still, yes. However during all of this I have been able to eat what I want, with few exceptions. Corn, peas and similar raw vegetables still get stuck, so I avoid them.
I am hoping the Remicade continues to work for me, however am concerned that I can't be on it forever, and am only 36 years old. Will I have to get a bag at some point and have the rest of what's left taken? I am supposed to see the GI in the next two months to discuss the future. That should be interesting.....
Please feel free to share your thoughts on my situation, it's nice to know I am among friends here.
