Hello, my name is Dave and this is my Crohns story. I was diagnosed in 2007 after 29 years of dealing with iron deficiency anemia, for which numerous doctors could not explain. I was a very active person but my diet left a lot to be desired. Intermittently, I would end up at ER with abdominal pain, vomiting, lethargy and they would put me on IV's and then send me on my way. During one hospitalization, they said I had food poisoning. Other times the would say it was GERD. I never had any diahrea, quite the contrary I was constipated a lot which confused the doctors.
Finally, a doctor referred me to a GI specialist who was adamant about getting to the bottom of my anemia issue. After my first colonoscopy, it revealed that I had no IC valve. The significance of this is not known since it had not been surgically removed. My GI doctor put me on antibiotics for "bacterial overgrowth" in my GI tract. She also ordered a small bowel follow through, which revealed nothing except it did take a longer time (3 hours vs 1 hour) for the barium to travel through my very slow digestive tract. Another thing I was experiencing on a nonspecific intermittent basis was blood in my stool (the dark, digested bad blood kind). Obviously, one explanation for the anemia although numerous tests (meckels scan, colonoscopies, endoscopies, etc) revealed no source of the bleeding. I did note at this time that mushrooms were a trigger to this GI bleed so I have been avoiding them ever since. In 2007, my GI doctor did a really expensive test to determine if I had Crohns.
The test revealed that I did but the only place she could see it was in the ileum. She said I had Crohns, but it was the mildest form she had ever seen. She put me on Asacol, the first therapeutic step to Crohns treatment. In 2009, I had my first diagnosed small bowel blockage. I say diagnosed because the pain I felt that day was like the pain I had on many other occassions, but were never diagnosed as small bowel blockages. I spent a week in the hospital with an NG tube and this blockage resolved without need for surgery. One month later, I was back in the hospital for a GI track bleed which caused my hemoglobin levels to drop from 12.5 (which was considered normal for me) to around 7, which is very low. Again, there were tests. A colonoscopy was performed but no source of the bleeding was found. The bleeding stopped befor the tagged RBC test could be performed and I was discharged. I was upgraded to the second step of Crohns therapeutic medicine, Imuran, which I was taking and doing well with until one month ago.
I was vacationing in Monterey, California and every seemed to be going great. After overindulging in a big meal on Thurday, I had some abdominal pain early Friday morning at 2am and 4am. I was not in the mood to do anything but sit around which I did for most of the day dealing with this abdominal pain. At around 3 pm the pain seemed to subside so I went out and did some things with my family. At 6 pm the pain came back with a vengeance and I went to the local ER for some treatment. The pain was incredible, like nothing I had felt before. It seemed like I could barely breathe as I lay on the ER table curled up in the fetal position, vomiting and in pain. The surgeon came in and talked to me about my crohns and the pain I was feeling. He did a CT scan and the results were not good. He said I would need an NG tube and we would give my digestive system a chance to rest, but if things did not get better, I would need surgery. The next day, the CT scan revealed things were not better and I went in for surgery a couple hours later. When I woke up from the surgery, I had a 9 inch scar from 3 inches below my belly button to a few inches below my breatbone. The surgeon had removed 85cm (about 3 feet) of diseased, perforated small bowel. I had some complications from the surgery, a fever of unknown origin treated with many different kinds of "heavy hitting" antibiotics. A spiking blood pressure, treated with blood pressure meds. A whole days worth of bad GI bleeding, for which I needed one unit of tranfused blood since my hematicrit (sp) had gone from 45 at admission to 22 after the days worth of bleeding. I thought for sure that this would be the time they would find the source of the bleed, but no, even the tagged RBC test revealed the bleeding had stopped or slowed to an undetectable level.
I was very frustrated that yet again, the source of the blleed was not found. However, I was happy to have received excellent care from an top notch surgeon, infectious disease doctor, GI doctor and General practice doctor all looking after me during my 3 week stay at the hospital. I have been home for a week now still weak and lethargic from low iron, but otherwise feeling good. I was on oral antibiotics for a week, but have finished those meds. I was not given a specific diet but do eat significantly less food, chewing each bite slowly and drinking tons of water and gatorade to stay hydrated. So that's my Crohns story, I hope I havent bored anyone with the length. I will be on Humira when I regain my strength.
Finally, a doctor referred me to a GI specialist who was adamant about getting to the bottom of my anemia issue. After my first colonoscopy, it revealed that I had no IC valve. The significance of this is not known since it had not been surgically removed. My GI doctor put me on antibiotics for "bacterial overgrowth" in my GI tract. She also ordered a small bowel follow through, which revealed nothing except it did take a longer time (3 hours vs 1 hour) for the barium to travel through my very slow digestive tract. Another thing I was experiencing on a nonspecific intermittent basis was blood in my stool (the dark, digested bad blood kind). Obviously, one explanation for the anemia although numerous tests (meckels scan, colonoscopies, endoscopies, etc) revealed no source of the bleeding. I did note at this time that mushrooms were a trigger to this GI bleed so I have been avoiding them ever since. In 2007, my GI doctor did a really expensive test to determine if I had Crohns.
The test revealed that I did but the only place she could see it was in the ileum. She said I had Crohns, but it was the mildest form she had ever seen. She put me on Asacol, the first therapeutic step to Crohns treatment. In 2009, I had my first diagnosed small bowel blockage. I say diagnosed because the pain I felt that day was like the pain I had on many other occassions, but were never diagnosed as small bowel blockages. I spent a week in the hospital with an NG tube and this blockage resolved without need for surgery. One month later, I was back in the hospital for a GI track bleed which caused my hemoglobin levels to drop from 12.5 (which was considered normal for me) to around 7, which is very low. Again, there were tests. A colonoscopy was performed but no source of the bleeding was found. The bleeding stopped befor the tagged RBC test could be performed and I was discharged. I was upgraded to the second step of Crohns therapeutic medicine, Imuran, which I was taking and doing well with until one month ago.
I was vacationing in Monterey, California and every seemed to be going great. After overindulging in a big meal on Thurday, I had some abdominal pain early Friday morning at 2am and 4am. I was not in the mood to do anything but sit around which I did for most of the day dealing with this abdominal pain. At around 3 pm the pain seemed to subside so I went out and did some things with my family. At 6 pm the pain came back with a vengeance and I went to the local ER for some treatment. The pain was incredible, like nothing I had felt before. It seemed like I could barely breathe as I lay on the ER table curled up in the fetal position, vomiting and in pain. The surgeon came in and talked to me about my crohns and the pain I was feeling. He did a CT scan and the results were not good. He said I would need an NG tube and we would give my digestive system a chance to rest, but if things did not get better, I would need surgery. The next day, the CT scan revealed things were not better and I went in for surgery a couple hours later. When I woke up from the surgery, I had a 9 inch scar from 3 inches below my belly button to a few inches below my breatbone. The surgeon had removed 85cm (about 3 feet) of diseased, perforated small bowel. I had some complications from the surgery, a fever of unknown origin treated with many different kinds of "heavy hitting" antibiotics. A spiking blood pressure, treated with blood pressure meds. A whole days worth of bad GI bleeding, for which I needed one unit of tranfused blood since my hematicrit (sp) had gone from 45 at admission to 22 after the days worth of bleeding. I thought for sure that this would be the time they would find the source of the bleed, but no, even the tagged RBC test revealed the bleeding had stopped or slowed to an undetectable level.
I was very frustrated that yet again, the source of the blleed was not found. However, I was happy to have received excellent care from an top notch surgeon, infectious disease doctor, GI doctor and General practice doctor all looking after me during my 3 week stay at the hospital. I have been home for a week now still weak and lethargic from low iron, but otherwise feeling good. I was on oral antibiotics for a week, but have finished those meds. I was not given a specific diet but do eat significantly less food, chewing each bite slowly and drinking tons of water and gatorade to stay hydrated. So that's my Crohns story, I hope I havent bored anyone with the length. I will be on Humira when I regain my strength.
