Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Hi everybody.
MaeLiz- I hope you read this. YOU ARE NOT ALONE!!!
I had always had what my mom called a "touchy stomach." But when I was 13 it became more than just my stomach. I had funny cramps and there was blood in the toilet. I told my mom something was wrong and she said it was just my period. Things kept getting worse. I remember my stomach always hurt and I slept alot. She took me to the family doctor and he told me to lose weight and do some sit-ups. I was about 70lbs at the time. He also gave me a bag of Motrin. He told me it was all a part of growing up. Give it a few years, you'll grow out of it. Most girls do. I started missing school so mom took me to another doctor. He said I was making things up to get out of school. He said my parents should talk to my teachers and see if I'm having problems at school. I didn't think that my parents really believed me anyway, so I just didn't bother telling them anymore. And I hated going to the doctor. Things kind of went on like that for the next few years. The next time I saw a doctor, I was 20 or 21. I went from 117lbs to 103lbs in about 2 weeks. So my mom freaked out and took me to a doctor. She was trying to prove that I was anorexic. The doctor told me that there was nothing wrong with me and I could stand to lose a few more pounds. I was sick and tired of being treated like it was all in my head. So, I just decided to tough it out.
Things got better for a short time. I found a better job, I moved out and got married. Life was good, for a little while. In November of 96, it all came back and then some. I was really scared so I found a new doctor. I didn't tell my husband. I just couldn't take it if he didn't believe me, too. And what if it was all my fault? What if I did this to myself? At first I really liked my new doctor. But when I told her about my little problem, she dismissed it as stress. I think I went back to see her 2 or 3 more times before she told me to "GET OVER IT!" She also told me to find a less stressful job. I hate to tell you this Dr. McK- but being broke and homeless is a little more stressful!
Once again, I went back to pretending that nothing was wrong. You would be surprised how well denial can work. Too bad it doesn't last. Then it happened. I was at work and the pain was getting unbearable. I went to the bathroom and when I looked down in the toilet. . . there was so much blood. Now, I've been through alot - fainting, blurry vision, non-stop diarrhea, fatigue, feeling like you're passing steaknives SIDEWAYS. I've been there. But this was different. I called my new doctor right away and left work early. She didn't even examine me. As soon as she walked in the room she said "Don't be afraid. I think I know what this is and I can help you." Finally, someone is telling me that it's not in my head and I'm not making a big deal out of nothing. She sent me to another doctor for a colonoscopy. I have Ulcerative Colitis.
I quit seeing my specialist for about 7 years. That was really stupid. I wasn't happy with how things were going. I was on Colazal forver. As soon as I stopped taking it, the symptoms came right back. So, I just quit going. Things have gotten worse. I had another scope in February. This time, they found a polyp. Lucky for me, it's not cancer. My lousy insurance company won't cover Lialda, so now I'm on Pentasa. I've stopped eating alot of foods that I love and I don't eat after 9pm.
It's hard to talk about but even harder to live with. My mom blames herself because in her mind she did something wrong that made me this way. So we just don't talk about it anymore. My husband is a little more understanding now. His friend has Crohn's and he's been in the hospital alot this year.
If you are not happy with your doctor, find a new one. ASK LOTS OF QUESTIONS. They will not tell you if you don't ask. Never stop looking and NEVER, NEVER give up.
Monsters hide in the dark.
MaeLiz- I hope you read this. YOU ARE NOT ALONE!!!
I had always had what my mom called a "touchy stomach." But when I was 13 it became more than just my stomach. I had funny cramps and there was blood in the toilet. I told my mom something was wrong and she said it was just my period. Things kept getting worse. I remember my stomach always hurt and I slept alot. She took me to the family doctor and he told me to lose weight and do some sit-ups. I was about 70lbs at the time. He also gave me a bag of Motrin. He told me it was all a part of growing up. Give it a few years, you'll grow out of it. Most girls do. I started missing school so mom took me to another doctor. He said I was making things up to get out of school. He said my parents should talk to my teachers and see if I'm having problems at school. I didn't think that my parents really believed me anyway, so I just didn't bother telling them anymore. And I hated going to the doctor. Things kind of went on like that for the next few years. The next time I saw a doctor, I was 20 or 21. I went from 117lbs to 103lbs in about 2 weeks. So my mom freaked out and took me to a doctor. She was trying to prove that I was anorexic. The doctor told me that there was nothing wrong with me and I could stand to lose a few more pounds. I was sick and tired of being treated like it was all in my head. So, I just decided to tough it out.
Things got better for a short time. I found a better job, I moved out and got married. Life was good, for a little while. In November of 96, it all came back and then some. I was really scared so I found a new doctor. I didn't tell my husband. I just couldn't take it if he didn't believe me, too. And what if it was all my fault? What if I did this to myself? At first I really liked my new doctor. But when I told her about my little problem, she dismissed it as stress. I think I went back to see her 2 or 3 more times before she told me to "GET OVER IT!" She also told me to find a less stressful job. I hate to tell you this Dr. McK- but being broke and homeless is a little more stressful!
Once again, I went back to pretending that nothing was wrong. You would be surprised how well denial can work. Too bad it doesn't last. Then it happened. I was at work and the pain was getting unbearable. I went to the bathroom and when I looked down in the toilet. . . there was so much blood. Now, I've been through alot - fainting, blurry vision, non-stop diarrhea, fatigue, feeling like you're passing steaknives SIDEWAYS. I've been there. But this was different. I called my new doctor right away and left work early. She didn't even examine me. As soon as she walked in the room she said "Don't be afraid. I think I know what this is and I can help you." Finally, someone is telling me that it's not in my head and I'm not making a big deal out of nothing. She sent me to another doctor for a colonoscopy. I have Ulcerative Colitis.
I quit seeing my specialist for about 7 years. That was really stupid. I wasn't happy with how things were going. I was on Colazal forver. As soon as I stopped taking it, the symptoms came right back. So, I just quit going. Things have gotten worse. I had another scope in February. This time, they found a polyp. Lucky for me, it's not cancer. My lousy insurance company won't cover Lialda, so now I'm on Pentasa. I've stopped eating alot of foods that I love and I don't eat after 9pm.
It's hard to talk about but even harder to live with. My mom blames herself because in her mind she did something wrong that made me this way. So we just don't talk about it anymore. My husband is a little more understanding now. His friend has Crohn's and he's been in the hospital alot this year.
If you are not happy with your doctor, find a new one. ASK LOTS OF QUESTIONS. They will not tell you if you don't ask. Never stop looking and NEVER, NEVER give up.
Monsters hide in the dark.
The waiting is just...old. I feel like I've been waiting forever. I've been symptomatic for years, and had no idea. I went to a Urologist and they thought that my constant Urinary Problems were because of my bowel issues, or mainly the fact that a month or more between bowel movements was the cause. I've been sick for a long time.
Ask questions? I'm at a loss of questions for the doctors. They make me feel trivial when they are looking me in the eyes.
What exactly did your doctor tell you?
When I originally went to the doctor I hadn't had a period in about three months, I was bloated (which my guess is from inflammation, I'm the same way now) and irritable. Being sick makes you that way though, but he claimed that the nausea, puking, etc was all from stress! He ran a pregnancy test first, of course, but then decided it was stress. Stupid doctor. Now it's been close to two years and I'm still having the same symptoms.
Do you have siblings? Are they sick? My brother has alot of problems. But he refuses to do anything about it. He said that a colonoscopy is sick and demeaning. I said try wearing DEPENDS before you're 40. Now that's demeaning. His youngest son is starting to have problems. He's 2 and has terrible diarrhea all the time.
That nut that did nothing? No, I didn't go back. I'm oh so tempted to with a copy of my CT and ask how he missed this for over a year. Sprain your wrist, and he's the doctor for you, but nothing more than that. He doesn't like the patients that come back more than once a year.
You know if this is becoming more common, why does it take so long to diagnose it? Oh, that's right- to save money. I wonder if the doctors and insurance companies realize that prevention and early detection not only save lives but are really cheaper in the long run.
I do hope that your son will be alright.