Hi, I'm Rachael, and I was just recently diagnosed with Crohn's Disease last month. I'm seventeen and I've been having stomach problems on and off since I was little.
I was taken to the hospital for severe abdominal pain in 2008 only to be told it was IBS, and would be told this for every related doctor's visit up until about 2 months ago. The doctor dismissed all of my symptoms, including extreme fatigue, joint swelling, bloated and swollen abdomen, and frequent urination as completely unrelated to eachother. I was told to be more active, eat food with more fiber(due to constipation), and was perscribed pills to reduce the frequency of urination. After her wise words did not help me in any way whatsoever, she referred me to a gastroenterologist. I went and he proceeded to tell me that, get this, I had IBS. He told me that a combination of my constipation and daily stress was causing the flare ups of pain. So, he perscribed polyethylene glycol to reduce the constipation therefore, reducing the abdominal pain. Turns out, that didn't work, which led him to believe that it could be something more serious. He scheduled a colonoscopy and upper endoscopy, both on the same day. It seemed like my bloatedness and pain was getting worse, accompanied with intermittent fevers and hot flashes. After the procedures were over and results were examined, he concluded that it was very likely I either had Crohn's Disease or Ulcerative Colitis. He said he was going to treat me as though I had Crohn's though, since the colonoscopy showed that my terminal ileum was severely inflamed. He prescribed pentasa and entocourt as well as scheduling a barium contrast with a small bowel follow through. I went through hours of swallowing the incredibly chalky lukewarm barium with x-rays every couple of hours only for the GI to tell me that they waited just a little too long to look at the area of my intestines that they needed to. Even with that being said, my GI told me that they basically got what they needed anyway, even though it wasn't as thorough as it should've been. He felt more confident from the barium contrast that I did in fact have Crohn's Disease, though he wasn't 100% positive. He was going to continue to treat me for it, saying that hopefully I'll just continue to stay on Pentasa and Entocourt and that it would put my disease into remission. A week after I had been put on the medications, I was feeling better already. The pain would still come and go, but seemed less frequent and less severe. I was so happy that it was working! Sure enough, just a week after I was put on those meds and started feeling better, I was hit by the most severe pain I've ever had in my entire life. At first I dismissed it as menstrual cramps, since the pain arrived on the first day of my period and seemed to feel more mentrual related than not. The pain was on and off all day but the severe pain didn't hit me until that night. I felt like I couldn't breathe, move, speak, or think. I had never experienced anything like it in my life, and can't think of anything worse to compare it to. It was constant, it didn't let up at all like I expected it to. I felt almost an "explosion" type feeling in my abdomen as the pain continued, which seriously freaked me out! I was scared and in tears, never feeling so helpless in my life! Nothing I did seemed to help. I tried turning over, sitting up, holding my breath...nothing helped. I used what energy I felt I had left to keep myself from screaming, and plus, I didn't want to freak my boyfriend and his family out since I was at his house, haha. After about 30-45 minutes or so of this personal hell, I decided to call my parents because my boyfriend and his family suggested I go to the hospital. They wouldn't answer their cell phones, so I continued to lay there and just deal with it. They finally called back, and called an ambulance, seeing as it would've taken us about 45 minutes to drive to the hospital. By the time my parents got there, the pain had subsided a little, but I was blacking out and could barely walk. As I arrived at the hospital, I told everyone there who asked that I was sure it was menstrual cramps, and not the Crohn's pain. I stayed in the hospital for a few days, where I got a CT-scan, blood work, etc. My GI came in and told me that I broke through the Pentasa and Entocourt, and that the pain was Crohn's related. I felt frustrated and discouraged, I was positive it was just severe menstrual cramps. I felt as though they didn't give my medication enough time to really settle in, and that getting my period messed everything up. But he said that my cycle could have triggered the flare up, and that the CT-scan confirmed that it was more serious than they thought. He continued to tell me the hellish side effects I was going to go through for the next couple of months of Prednisone and that I would be put on 6mp and that it would hopefully keep my Cronh's in remission.
It's the beginning of my second month of Prednisone. I started out on 40mg but started tapering by 5mg a week. Though I'm tapering and cut back to 25mg today, the tell-tale wonderful side-effects have recently started to show up. I have "apple belly", "moon face"(still getting bigger), weight gain, uncontrollable hunger, acne, my skin won't heal, etc. My mood swings started almost immediately after I started taking prednisone, but has subsided majorly. I'm dieting majorly, which is extremely difficult when you want to eat all the time! These stupid steroids have erased my self esteem almost completely and I hate what I see when I look in the mirror! I feel like they've ruined my summer; scared to be seen wearing a bikini with the weird weight distribution to my tummy and my face, not to mention the never-healing shoulder acne/:
So that's pretty much where I'm at now. Completely no pain(almost), but just putting up with the prednisone. And that's my long, boring, maybe too detailed story of the short journey I've had with being diagnosed with Crohn's Disease.
I was taken to the hospital for severe abdominal pain in 2008 only to be told it was IBS, and would be told this for every related doctor's visit up until about 2 months ago. The doctor dismissed all of my symptoms, including extreme fatigue, joint swelling, bloated and swollen abdomen, and frequent urination as completely unrelated to eachother. I was told to be more active, eat food with more fiber(due to constipation), and was perscribed pills to reduce the frequency of urination. After her wise words did not help me in any way whatsoever, she referred me to a gastroenterologist. I went and he proceeded to tell me that, get this, I had IBS. He told me that a combination of my constipation and daily stress was causing the flare ups of pain. So, he perscribed polyethylene glycol to reduce the constipation therefore, reducing the abdominal pain. Turns out, that didn't work, which led him to believe that it could be something more serious. He scheduled a colonoscopy and upper endoscopy, both on the same day. It seemed like my bloatedness and pain was getting worse, accompanied with intermittent fevers and hot flashes. After the procedures were over and results were examined, he concluded that it was very likely I either had Crohn's Disease or Ulcerative Colitis. He said he was going to treat me as though I had Crohn's though, since the colonoscopy showed that my terminal ileum was severely inflamed. He prescribed pentasa and entocourt as well as scheduling a barium contrast with a small bowel follow through. I went through hours of swallowing the incredibly chalky lukewarm barium with x-rays every couple of hours only for the GI to tell me that they waited just a little too long to look at the area of my intestines that they needed to. Even with that being said, my GI told me that they basically got what they needed anyway, even though it wasn't as thorough as it should've been. He felt more confident from the barium contrast that I did in fact have Crohn's Disease, though he wasn't 100% positive. He was going to continue to treat me for it, saying that hopefully I'll just continue to stay on Pentasa and Entocourt and that it would put my disease into remission. A week after I had been put on the medications, I was feeling better already. The pain would still come and go, but seemed less frequent and less severe. I was so happy that it was working! Sure enough, just a week after I was put on those meds and started feeling better, I was hit by the most severe pain I've ever had in my entire life. At first I dismissed it as menstrual cramps, since the pain arrived on the first day of my period and seemed to feel more mentrual related than not. The pain was on and off all day but the severe pain didn't hit me until that night. I felt like I couldn't breathe, move, speak, or think. I had never experienced anything like it in my life, and can't think of anything worse to compare it to. It was constant, it didn't let up at all like I expected it to. I felt almost an "explosion" type feeling in my abdomen as the pain continued, which seriously freaked me out! I was scared and in tears, never feeling so helpless in my life! Nothing I did seemed to help. I tried turning over, sitting up, holding my breath...nothing helped. I used what energy I felt I had left to keep myself from screaming, and plus, I didn't want to freak my boyfriend and his family out since I was at his house, haha. After about 30-45 minutes or so of this personal hell, I decided to call my parents because my boyfriend and his family suggested I go to the hospital. They wouldn't answer their cell phones, so I continued to lay there and just deal with it. They finally called back, and called an ambulance, seeing as it would've taken us about 45 minutes to drive to the hospital. By the time my parents got there, the pain had subsided a little, but I was blacking out and could barely walk. As I arrived at the hospital, I told everyone there who asked that I was sure it was menstrual cramps, and not the Crohn's pain. I stayed in the hospital for a few days, where I got a CT-scan, blood work, etc. My GI came in and told me that I broke through the Pentasa and Entocourt, and that the pain was Crohn's related. I felt frustrated and discouraged, I was positive it was just severe menstrual cramps. I felt as though they didn't give my medication enough time to really settle in, and that getting my period messed everything up. But he said that my cycle could have triggered the flare up, and that the CT-scan confirmed that it was more serious than they thought. He continued to tell me the hellish side effects I was going to go through for the next couple of months of Prednisone and that I would be put on 6mp and that it would hopefully keep my Cronh's in remission.
It's the beginning of my second month of Prednisone. I started out on 40mg but started tapering by 5mg a week. Though I'm tapering and cut back to 25mg today, the tell-tale wonderful side-effects have recently started to show up. I have "apple belly", "moon face"(still getting bigger), weight gain, uncontrollable hunger, acne, my skin won't heal, etc. My mood swings started almost immediately after I started taking prednisone, but has subsided majorly. I'm dieting majorly, which is extremely difficult when you want to eat all the time! These stupid steroids have erased my self esteem almost completely and I hate what I see when I look in the mirror! I feel like they've ruined my summer; scared to be seen wearing a bikini with the weird weight distribution to my tummy and my face, not to mention the never-healing shoulder acne/:
So that's pretty much where I'm at now. Completely no pain(almost), but just putting up with the prednisone. And that's my long, boring, maybe too detailed story of the short journey I've had with being diagnosed with Crohn's Disease.
