- Joined
- Sep 16, 2011
- Messages
- 140
Hello everyone out there. I'm so glad this forum exists! Crohn's is such a "gross" problem (even though there's basically nothing that grosses me out anymore!) that it's hard to talk about it with non-Crohn's people.
So here's my story:
In high school I was extremely fatigued. I slept all the time and was told by the doctors I saw that I was just a normal teenager with fatigue from growing/hormones. Eventually I started vomiting and getting bad "stomach" cramps multiple times/day. After seeing multiple specialists and undergoing myriads of tests, I was finally diagnosed with Crohn's my senior year. I was put on heavy doses of Prednisone and some other meds like Flagyl and I can't even remember what else. Prednisone helped for a while but the side effects were TERRIBLE. I looked like a chipmunk for my graduation.
During my first year of college (I cannot believe I was able to go to school, and college, while going through all this! I even worked, too!) my symptoms got worse, and no meds helped. I ended up getting a colonic resection surgery and taking a leave of absence from school. I was down to about 75 pounds. What had happened was that it took so long to diagnose the Crohn's since I didn't have the typical symptoms (I never had diarrhea), that my intestines had scarred basically shut, and no food would pass through. So they had to remove the Crohn's surgically.
After the surgery I felt great! I had no Crohn's symptoms and regained a healthy weight.
I kept waiting for the Crohn's to come back because I was told it usually does, but for 10 years I had no symptoms.
Until about a year ago. I started feeling "off" with my digestion. I started having painful bowel movements, mucus in my stool, and a bit of fatigue. I went in for a routine colonoscopy in January of this year, but the results came back as normal. Also in January I got a kidney stone (my first - ouch!) so I was a bit preoccupied with following up about my intestinal issues. During the year my symptoms got worse, more pain with bowel movements, mucus, sometimes blood in my stool, so I went back to my GI. I got a CT scan enteroscopy about a week ago, and she found "thickness in my intestinal walls", which she said suggests the Crohn's is flaring up.
I'm so grateful that I've had 10 years of no flare-ups, but now I'm not really sure what to do. My symptoms are not nearly as severe as they were when I was first diagnosed. Some days I feel mostly okay, and some days I feel not so good. But I'm still able to work and carry on my life as pretty normal. My GI said we could just wait and see what happens, or I could start Pentasa to hopefully keep the flare-up from getting worse, and keep others at bay. I really hesitate to take medication because I remember all the myriad of side effects I had from the drug cocktail I was on before, but I'm also afraid that if I don't take any medication my symptoms may get worse, and I really don't want that to happen!
So, that's my story, and that's why I joined the forum. I look forward to reading others experiences and thoughts on how to live with this crazy, unpredictable disease.
So here's my story:
In high school I was extremely fatigued. I slept all the time and was told by the doctors I saw that I was just a normal teenager with fatigue from growing/hormones. Eventually I started vomiting and getting bad "stomach" cramps multiple times/day. After seeing multiple specialists and undergoing myriads of tests, I was finally diagnosed with Crohn's my senior year. I was put on heavy doses of Prednisone and some other meds like Flagyl and I can't even remember what else. Prednisone helped for a while but the side effects were TERRIBLE. I looked like a chipmunk for my graduation.
During my first year of college (I cannot believe I was able to go to school, and college, while going through all this! I even worked, too!) my symptoms got worse, and no meds helped. I ended up getting a colonic resection surgery and taking a leave of absence from school. I was down to about 75 pounds. What had happened was that it took so long to diagnose the Crohn's since I didn't have the typical symptoms (I never had diarrhea), that my intestines had scarred basically shut, and no food would pass through. So they had to remove the Crohn's surgically.
After the surgery I felt great! I had no Crohn's symptoms and regained a healthy weight.
I kept waiting for the Crohn's to come back because I was told it usually does, but for 10 years I had no symptoms.
Until about a year ago. I started feeling "off" with my digestion. I started having painful bowel movements, mucus in my stool, and a bit of fatigue. I went in for a routine colonoscopy in January of this year, but the results came back as normal. Also in January I got a kidney stone (my first - ouch!) so I was a bit preoccupied with following up about my intestinal issues. During the year my symptoms got worse, more pain with bowel movements, mucus, sometimes blood in my stool, so I went back to my GI. I got a CT scan enteroscopy about a week ago, and she found "thickness in my intestinal walls", which she said suggests the Crohn's is flaring up.
I'm so grateful that I've had 10 years of no flare-ups, but now I'm not really sure what to do. My symptoms are not nearly as severe as they were when I was first diagnosed. Some days I feel mostly okay, and some days I feel not so good. But I'm still able to work and carry on my life as pretty normal. My GI said we could just wait and see what happens, or I could start Pentasa to hopefully keep the flare-up from getting worse, and keep others at bay. I really hesitate to take medication because I remember all the myriad of side effects I had from the drug cocktail I was on before, but I'm also afraid that if I don't take any medication my symptoms may get worse, and I really don't want that to happen!
So, that's my story, and that's why I joined the forum. I look forward to reading others experiences and thoughts on how to live with this crazy, unpredictable disease.
