J
Jen10880
Guest
Hi I am new to the forum. I have been having a hard time being diagnosed with crohns. Here is a little bit of my history. My dad and my grandma both had crohns my dad had it very severe. He had fistulas and many ulcers. He had many surgeries and eventually he ended up having a colostomy bag. He went undiagnosed for a few years they told him it was psychological. He was 5'8"and weighted 90 lbs at 19 when he was in college. He had to drop out because he was so sick. He ended up passing away 6 years ago today actually because he developed another inflammatory disease in his lungs. Doctors told him once you have one inflammatory disease you are prone to getting others. My grandma was first diagnosed with colitis and years later diagnosed with crohns. She never had any ulcers. She had crohns in her ilium. She was anemic and had a b12 deficiency when she was young. I believe she had some of her small intestine removed but her crohns never got as bad as my dads.
Now on to me. For 18 months I have been having diarrhea a few times a day sometimes with blood. I have not had a normal bowel movement since April 07. I have almost always been anemic at least the last 5 years since I have been getting routine blood tests. I now have a b12 deficiency. I had a blood test done to see where if the b12 deficiency was coming from my stomach, that came back negative so I was told it must be coming from the ilium. My white blood cells are elevated and my CRP test results were high showing I had inflammation. Sept 07 I had the antibody test done to see if I had the Crohns antibody. That came back positive they called me and told me I had crohns and they scheduled a colonoscopy which i had in Oct of 07 that didn't show any crohns they said. In a letter I got from the dr. it said I had quiescent crohn's, which I guess means inactive and it said after having crohns 8 years I would have to get routine colonoscopies once a year cause my risk of colon cancer was now greater. I made a follow up appt with the dr. after getting the results and he told me I wouldn't need another colonoscopy for 30 years(this was the same dr. who signed the letter I got in the mail). I have still been having the same symptoms and since I was getting mixed messages from my dr. I went to a different doctor in August 08 and he wanted to do another colonoscopy. He tells me since there were no ulcers I don't have crohns that with crohns they look for ulcers. He said I had inflammation in the colon and that it was IBS and I should take some Imodium for it. Now I would think a doctor would know that IBS does not cause inflammation only Inflammatory Bowel disease cause inflammation. I was also upset because I know you can have crohns without having ulcers just with inflammation thats what my grandma had. The Dr forgot I guess that I wasn't new to crohns I have grown up with people who had it. I requested a copy of my medical reports from the colonoscopy. I received them in the mail on Monday. I looked at the biopsy report and the biopsy they took of the colon says "Final Diagnosis- Colon- Acute Colitis" but the dr says I have IBS cause there were no ulcers. Tomorrow I am going to request a copy of the colonoscopy report from Oct 07 and see exactly what that said. But I am pretty sure there was no inflammation at that point, but its been getting worse. I am not sure what I have to wait for to get a diagnosis or some medicine to help the inflammation. I seem to be having bad luck with Drs. I am so frustrated and don't know what to do.
Now on to me. For 18 months I have been having diarrhea a few times a day sometimes with blood. I have not had a normal bowel movement since April 07. I have almost always been anemic at least the last 5 years since I have been getting routine blood tests. I now have a b12 deficiency. I had a blood test done to see where if the b12 deficiency was coming from my stomach, that came back negative so I was told it must be coming from the ilium. My white blood cells are elevated and my CRP test results were high showing I had inflammation. Sept 07 I had the antibody test done to see if I had the Crohns antibody. That came back positive they called me and told me I had crohns and they scheduled a colonoscopy which i had in Oct of 07 that didn't show any crohns they said. In a letter I got from the dr. it said I had quiescent crohn's, which I guess means inactive and it said after having crohns 8 years I would have to get routine colonoscopies once a year cause my risk of colon cancer was now greater. I made a follow up appt with the dr. after getting the results and he told me I wouldn't need another colonoscopy for 30 years(this was the same dr. who signed the letter I got in the mail). I have still been having the same symptoms and since I was getting mixed messages from my dr. I went to a different doctor in August 08 and he wanted to do another colonoscopy. He tells me since there were no ulcers I don't have crohns that with crohns they look for ulcers. He said I had inflammation in the colon and that it was IBS and I should take some Imodium for it. Now I would think a doctor would know that IBS does not cause inflammation only Inflammatory Bowel disease cause inflammation. I was also upset because I know you can have crohns without having ulcers just with inflammation thats what my grandma had. The Dr forgot I guess that I wasn't new to crohns I have grown up with people who had it. I requested a copy of my medical reports from the colonoscopy. I received them in the mail on Monday. I looked at the biopsy report and the biopsy they took of the colon says "Final Diagnosis- Colon- Acute Colitis" but the dr says I have IBS cause there were no ulcers. Tomorrow I am going to request a copy of the colonoscopy report from Oct 07 and see exactly what that said. But I am pretty sure there was no inflammation at that point, but its been getting worse. I am not sure what I have to wait for to get a diagnosis or some medicine to help the inflammation. I seem to be having bad luck with Drs. I am so frustrated and don't know what to do.
