Hi,
I have never really used any of these group forms before but I think finding people who can relate could really help. First off I'm a 20 year old female and after about 6 years of many different symptoms my doctors have finally narrowed down my diagnosis to crohns or behcets (my GI doctor is leaning more towards crohns though). Ever since I could remember I have had bad ulcers in my mouth that my doctor always said were caker sores. When I was about 15 I started to get horrible stomach cramps (located at the middle of the bottom of my ribs). When I would have these pains all I could do is lay on the floor and cry. I was told I was just constipated. Then when I was 16 I had my first outbreak of vagianal ulcers. They were large and painful and I had to miss a few weeks of school since I could not even walk. I visited the ER when I first noticed them and with out even giving me an std check, they told me it was herpies- very devistating to hear at 16! But after MANY std checks by my gyno and other doctors all possible stds were rulled out and the biopsy they did on one of the ulcers came back inconclusive.
I was told I would never know what it was unless it came back again. I also started having anal fissures around that time. Last year I became pregnant and had a miscarriage at about 12 weeks and became pregnant again a month later. At the beginning of both pregnancies i got large hard lumps of my feet (i was told were minor blood clots) and my oral ulcers spread to my throat. I was so scared when i started spitting up large amounts of blood and had no idea why. I had a very complicated pregnancy and my son had IUGR. I was hospitalized for 6 weeks and then at 35 weeks they preformed a c section . My son was 3 lbs 12.8 oz. A few months after I had him I had another flare of vaginal ulcers. It started with a very high fever of 103 degrees then large ulcers. My rheumatologist put me on corticosteroids and it quickly healed. She said that was enough proof along with all my symtoms that it was behcets or crohns. Once I told her about my anal fissure she recommended me to a GI. He gave me a rectal exam and was surprised by the size of my fissure. He said most are just a small cut and mine was the size of my small finger's finger nail. He ordered a colonoscopy that showed many ulcers in my small intestine and terminal ileum.
The biopsies came back inconclusive and he ordered a CT scan. He also agrees its either crohns or behcets from the colonoscopy and oral, interal and vaginal ulcers but wants the CT to pinpoint which one it is. He also order an ultrasound of my Gullbladder because he thinks I may have gullstones and an upper endoscopy because of how nauseous I always feel and all my stomach pain. Sorry for this being so long but I am bad at condensing and it is nice to be able to talk about it. Most people are not interested in hearing about it. Oh also my doc tried to put me on imuran but it gave me such horrible knee joint pain that I could not walk and I was scared to hold my son since my knees would give out when I would walk. I work 40 hours a week on my feet so I could not handle the pain so I stoppe taking it. Anyone who can relate to my symptoms would really help me feel better. I felt like a "freak" or "hypochondriac" for a lOng time, glad I can finally see a light at the end of the tunnel and know that I am not imagining things.
Thanks,
Mikalene
I have never really used any of these group forms before but I think finding people who can relate could really help. First off I'm a 20 year old female and after about 6 years of many different symptoms my doctors have finally narrowed down my diagnosis to crohns or behcets (my GI doctor is leaning more towards crohns though). Ever since I could remember I have had bad ulcers in my mouth that my doctor always said were caker sores. When I was about 15 I started to get horrible stomach cramps (located at the middle of the bottom of my ribs). When I would have these pains all I could do is lay on the floor and cry. I was told I was just constipated. Then when I was 16 I had my first outbreak of vagianal ulcers. They were large and painful and I had to miss a few weeks of school since I could not even walk. I visited the ER when I first noticed them and with out even giving me an std check, they told me it was herpies- very devistating to hear at 16! But after MANY std checks by my gyno and other doctors all possible stds were rulled out and the biopsy they did on one of the ulcers came back inconclusive.
I was told I would never know what it was unless it came back again. I also started having anal fissures around that time. Last year I became pregnant and had a miscarriage at about 12 weeks and became pregnant again a month later. At the beginning of both pregnancies i got large hard lumps of my feet (i was told were minor blood clots) and my oral ulcers spread to my throat. I was so scared when i started spitting up large amounts of blood and had no idea why. I had a very complicated pregnancy and my son had IUGR. I was hospitalized for 6 weeks and then at 35 weeks they preformed a c section . My son was 3 lbs 12.8 oz. A few months after I had him I had another flare of vaginal ulcers. It started with a very high fever of 103 degrees then large ulcers. My rheumatologist put me on corticosteroids and it quickly healed. She said that was enough proof along with all my symtoms that it was behcets or crohns. Once I told her about my anal fissure she recommended me to a GI. He gave me a rectal exam and was surprised by the size of my fissure. He said most are just a small cut and mine was the size of my small finger's finger nail. He ordered a colonoscopy that showed many ulcers in my small intestine and terminal ileum.
The biopsies came back inconclusive and he ordered a CT scan. He also agrees its either crohns or behcets from the colonoscopy and oral, interal and vaginal ulcers but wants the CT to pinpoint which one it is. He also order an ultrasound of my Gullbladder because he thinks I may have gullstones and an upper endoscopy because of how nauseous I always feel and all my stomach pain. Sorry for this being so long but I am bad at condensing and it is nice to be able to talk about it. Most people are not interested in hearing about it. Oh also my doc tried to put me on imuran but it gave me such horrible knee joint pain that I could not walk and I was scared to hold my son since my knees would give out when I would walk. I work 40 hours a week on my feet so I could not handle the pain so I stoppe taking it. Anyone who can relate to my symptoms would really help me feel better. I felt like a "freak" or "hypochondriac" for a lOng time, glad I can finally see a light at the end of the tunnel and know that I am not imagining things.
Thanks,
Mikalene
You poor thing.
