J
JXC
Guest
Hello all. My name is Jon. I just found this website and thought I would join. I am 26 years old, and was Diagnosed with Crohn's in the fall of 1996 when I was 14 years old. I guess I'll share my story.
I had just started high school, so at first I equated the stomach pains to nerves. They kept getting worse though, and I started to not even want to eat, and lost a lot of weight, so I went to a Gastroenterologist. Had a Colonoscopy and a an Endoscopy. Needless to say, that's some pretty scary stuff for a 14 year old. They diagnosed me with Crohn's pretty quickly and put me on steriods and some drugs I don't remember. They didn't help though, and I kept getting worse. So I had to go to the hospital for a week in December of 96. Spent Christmas in the hospital. Not fun. Ended up getting a blood transfusion because I was anemic and a pic-line thru my arm that went up to a main artery so I could be fed thru IV and then I didn't eat anything for a few days, and was on a clear liquid diet for a few weeks. I kept the pic-line in, even after I left the hospital and went home. I was fed at night and slowly got back to eating food. The pain had gone away since I hadn't been eating and I started to gain weight again and have a desire to eat.
They hoped that the drugs they had me on would keep me in remission...I can't remember what the drugs were...but they slowly took me of steriods. Well a few months passed and I started to get bad again. Eventually by May 97 I was worse then I ever was. I was down to 136 pounds, and I was 6'3". I was anemic again and had to go to the hospital again. Same thing happened at the hospital. Endoscopy, Colonoscopy, Blood Transfusion, pic-line. I was in the hospital for a week again. This time I was on steriods, azathioprine (150mg a day), and Pentasa (4000mg a day). After not eating while in the hosptail and being fed through an IV, and then going home and slowly going back to eating while still being fed through the IV for a month or so, I started to feel better.
I had missed most of my Freshman year of high school, so I had to have tudors come in and help me get caught up so that I was ready for my Sophomore year. I never got to make all the friends that I probably would have, so it took me awhile to make friends my Sophomore year, but eventually it happened and I met some really great people that I am still friends with today.
Eventually my doctor wanted to get me off of steriods again, so we slowly did that, and I stayed in remission. Then after one doctor visit, my blood was taken and they found that azathioprine was causing my white blood cell count to be too low, so the brought me down to 100mg a day. I still stayed on the 4000mg a day of Pentasa, but was completely done with taking steriods.
Unfortunately, I got Kidney Stones in late 98, and we aren't sure if it was related with the Pentasa, or the Crohn's, or anything. But that was very painful, but eventually I got through that.
I stayed away from nuts, and MSG, and raw veggies, and other acidic or hard to digest foods. I still ate meat, and fast food from time to time, and other things that aren't good for you, but it didn't seem to bother my Crohn's.
Other than the very occasional diarrhea, and stomach pain, both of which have gotten even less frequent as I've gotten older, I haven't had any problems since 1998. In like 99 and 2000, my stomach may hurt for a few weeks, but then it would go away.
Since about 2001 though, I feel like my stomach has been as normal as anybody elses. I don't take 4000mg of Pentasa anymore. It ends up being more like 1000mg a day...sometimes 2000mg if I think about it. And with the azathioprine, I usually take 1 50mg tablet a day, sometimes two if I think about it. I have talked with my Gastroenterologist, and he has suggested going off the Pentasa, or maybe even the azathioprine, saying it may not bee necessary. I've asked if it health wise it would benefit me, and he said no. He just said it would be less pills I'd have to take. So I take less then I used to, but I don't know about going off either completely. I also take Men's Health One a Day with fish-oil. I think it helps with health in general. I have also thought about buying some Shark Cartilage. I heard somebody say something about it with Crohn's. But I actually am thinking about it more for my joints, because my knees have started bothering me. My job is actually very strenuous phyiscally, but the Crohn's hasn't limited me in my job at all. I'm just a big guy and my knees hurt from it.
So I guess that's it. I don't know if anybody else has had the success I have had with either Pentasa or Azathioprine. I see my Gastroenterologist once a year and get my blood taken then. He really doesn't say much other then ask me how i'm doing...I say fine, and that things are all normal. I had a colonoscopy 4 years ago.
When I had my first Colonoscopy my doctor said that on a scale of 1 to 10 for Chron's, it was an 11. He said it was in my stomach, that's why they did the endoscopy, and all through my bowels, and horrible in my illium. When I had the Colonoscopy 4 years ago, he said on a scale from 1 to 10, it was a 1. And it was there, but not bad at all.
I feel blessed for feeling good, being healthy, and being able to do what I want to do with my life. I am healtier when it comes to diet now, eating less fast food, but I eat everything. From raw veggies, to nuts to anything. I try to stay away from MSG, but I eat it sometimes. I honestly have seen no connection between my diet and my Crohn's. I don't know if that's abnormal or not. I pray that I can continue to feel the way I do for as long as possible. I assume that some day it will get bad again, but I just hope that day is far away.
I had just started high school, so at first I equated the stomach pains to nerves. They kept getting worse though, and I started to not even want to eat, and lost a lot of weight, so I went to a Gastroenterologist. Had a Colonoscopy and a an Endoscopy. Needless to say, that's some pretty scary stuff for a 14 year old. They diagnosed me with Crohn's pretty quickly and put me on steriods and some drugs I don't remember. They didn't help though, and I kept getting worse. So I had to go to the hospital for a week in December of 96. Spent Christmas in the hospital. Not fun. Ended up getting a blood transfusion because I was anemic and a pic-line thru my arm that went up to a main artery so I could be fed thru IV and then I didn't eat anything for a few days, and was on a clear liquid diet for a few weeks. I kept the pic-line in, even after I left the hospital and went home. I was fed at night and slowly got back to eating food. The pain had gone away since I hadn't been eating and I started to gain weight again and have a desire to eat.
They hoped that the drugs they had me on would keep me in remission...I can't remember what the drugs were...but they slowly took me of steriods. Well a few months passed and I started to get bad again. Eventually by May 97 I was worse then I ever was. I was down to 136 pounds, and I was 6'3". I was anemic again and had to go to the hospital again. Same thing happened at the hospital. Endoscopy, Colonoscopy, Blood Transfusion, pic-line. I was in the hospital for a week again. This time I was on steriods, azathioprine (150mg a day), and Pentasa (4000mg a day). After not eating while in the hosptail and being fed through an IV, and then going home and slowly going back to eating while still being fed through the IV for a month or so, I started to feel better.
I had missed most of my Freshman year of high school, so I had to have tudors come in and help me get caught up so that I was ready for my Sophomore year. I never got to make all the friends that I probably would have, so it took me awhile to make friends my Sophomore year, but eventually it happened and I met some really great people that I am still friends with today.
Eventually my doctor wanted to get me off of steriods again, so we slowly did that, and I stayed in remission. Then after one doctor visit, my blood was taken and they found that azathioprine was causing my white blood cell count to be too low, so the brought me down to 100mg a day. I still stayed on the 4000mg a day of Pentasa, but was completely done with taking steriods.
Unfortunately, I got Kidney Stones in late 98, and we aren't sure if it was related with the Pentasa, or the Crohn's, or anything. But that was very painful, but eventually I got through that.
I stayed away from nuts, and MSG, and raw veggies, and other acidic or hard to digest foods. I still ate meat, and fast food from time to time, and other things that aren't good for you, but it didn't seem to bother my Crohn's.
Other than the very occasional diarrhea, and stomach pain, both of which have gotten even less frequent as I've gotten older, I haven't had any problems since 1998. In like 99 and 2000, my stomach may hurt for a few weeks, but then it would go away.
Since about 2001 though, I feel like my stomach has been as normal as anybody elses. I don't take 4000mg of Pentasa anymore. It ends up being more like 1000mg a day...sometimes 2000mg if I think about it. And with the azathioprine, I usually take 1 50mg tablet a day, sometimes two if I think about it. I have talked with my Gastroenterologist, and he has suggested going off the Pentasa, or maybe even the azathioprine, saying it may not bee necessary. I've asked if it health wise it would benefit me, and he said no. He just said it would be less pills I'd have to take. So I take less then I used to, but I don't know about going off either completely. I also take Men's Health One a Day with fish-oil. I think it helps with health in general. I have also thought about buying some Shark Cartilage. I heard somebody say something about it with Crohn's. But I actually am thinking about it more for my joints, because my knees have started bothering me. My job is actually very strenuous phyiscally, but the Crohn's hasn't limited me in my job at all. I'm just a big guy and my knees hurt from it.
So I guess that's it. I don't know if anybody else has had the success I have had with either Pentasa or Azathioprine. I see my Gastroenterologist once a year and get my blood taken then. He really doesn't say much other then ask me how i'm doing...I say fine, and that things are all normal. I had a colonoscopy 4 years ago.
When I had my first Colonoscopy my doctor said that on a scale of 1 to 10 for Chron's, it was an 11. He said it was in my stomach, that's why they did the endoscopy, and all through my bowels, and horrible in my illium. When I had the Colonoscopy 4 years ago, he said on a scale from 1 to 10, it was a 1. And it was there, but not bad at all.
I feel blessed for feeling good, being healthy, and being able to do what I want to do with my life. I am healtier when it comes to diet now, eating less fast food, but I eat everything. From raw veggies, to nuts to anything. I try to stay away from MSG, but I eat it sometimes. I honestly have seen no connection between my diet and my Crohn's. I don't know if that's abnormal or not. I pray that I can continue to feel the way I do for as long as possible. I assume that some day it will get bad again, but I just hope that day is far away.
