thought anyone?
Hello everyone, I just found this site and this is my story.
About 10 years ago I began to experience very mild stomach pain from time to time. Then quite suddenly I started bleeding quite alot and ended up in the hospital. The bleeding stopped in the hospital and I returned to normal life. ABout 6 months later the bleeding came back, back to the ER I went. This time it resulted in a surgery removing about 14" of my jejunum. I was told that the removed tissue was hardened and scarred and was consistant with a diagnosis of Crohn's disease. Again, this was nine years ago, I was 22.
I recovered very easily from the surgery and continued life as if nothing had happened. I had almost no idea what Crohn's disease was. I did a little research on it and really could not relate at all to the typical symptoms and stories about the disease. I felt that maybe I was in denial but I just could not make connection with the disease. For the next nine years I all but forgot about the Crohn's diagnosis. I never went back to the GI after surgery, in fact, I have only been to the doctor just a couple times in the last nine years and for unrelated issues. I have not had any symptoms that would be typical of Crohn's during this nine year period (I never really had any before the surgery either, the bleeding came rather suddenly). At most, I MIGHT be able to say that I had heartburn or diarhea just a tad more frequently than most people but that can be said about many people. Also, I was a heavy drinker during that whole time, I ate tons of food all of the time, loved to eat and cook spicy thai and indian foods and just generally enjoyed eating. I was relatively healthy and lived a normal life.
Now, this past Novemeber things changed. Almost overnight I began to experience extreme abdominal pain. The pain followed eating. Several hours after a meal my gut will start to make very loud and prolonged sounds like unatural gurgling. I will get bulges that move around my abdomen as the food seems to struggle to pass through. Most of the time this is very painful but sometimes, oddly enough, there is no pain just a the gurgling and moving bulges in belly. If it wasn;t so frightening it would be almost humorous to witness. It looks and sounds like an alien trying to escape inside of me. This has been going for over two months. If I dont eat I dont have problems. If I eat little or lightly I have little or light problems. If I eat a whole meal I will have bigger problems. It doesn;t seem to matter what I eat, the pain seems to be directly related to the volume of food I consume. I am experiencing no diarhea or any unusal BM issues. In fact, my BM's seem more regular and healthy than usual. I must comment though that the pain, when at its worst, (which is 3-4 days out of the week), is extreme and absolutley debilitating.
So, I go to the doc and get a CT scan. A narrowing in the small intestine is detected. I go to the GI and he orders more imaging (no results yet, we are now caught up to the present). He tells me that I have a severe Crohn's flare up and that it will require surgery (if the area is hardened and scarred) or a regiment of remicaid infusions. He orders a blood test that can detect how active the disease is (I guess?) It comes back as normal, which he seems perplexed by. That is where I am at now.
It could be that I have been and continue to be in deep denial about having Crohn's, but I am not trying to be. But even now, as I read through many of your stories and experiences, there is some simialiarity, but there really seems to be a disconnect from what I have experienced. Again, I am not trying to convince myself or seek validation that I do not have Crohn's. I just want to know what is wrong with me and I have some reservations about what I am being told.
What do you think? My initial instinct is that I have a mechanical issue (maybe caused by Crohn's). That something is causing a partial blockage, kink, adhesion in my intestine. If the narrowing is being caused by a severe Crohn's flare up, wouldn't the blood test reveal that activity? Hmmmmm.....
Hello everyone, I just found this site and this is my story.
About 10 years ago I began to experience very mild stomach pain from time to time. Then quite suddenly I started bleeding quite alot and ended up in the hospital. The bleeding stopped in the hospital and I returned to normal life. ABout 6 months later the bleeding came back, back to the ER I went. This time it resulted in a surgery removing about 14" of my jejunum. I was told that the removed tissue was hardened and scarred and was consistant with a diagnosis of Crohn's disease. Again, this was nine years ago, I was 22.
I recovered very easily from the surgery and continued life as if nothing had happened. I had almost no idea what Crohn's disease was. I did a little research on it and really could not relate at all to the typical symptoms and stories about the disease. I felt that maybe I was in denial but I just could not make connection with the disease. For the next nine years I all but forgot about the Crohn's diagnosis. I never went back to the GI after surgery, in fact, I have only been to the doctor just a couple times in the last nine years and for unrelated issues. I have not had any symptoms that would be typical of Crohn's during this nine year period (I never really had any before the surgery either, the bleeding came rather suddenly). At most, I MIGHT be able to say that I had heartburn or diarhea just a tad more frequently than most people but that can be said about many people. Also, I was a heavy drinker during that whole time, I ate tons of food all of the time, loved to eat and cook spicy thai and indian foods and just generally enjoyed eating. I was relatively healthy and lived a normal life.
Now, this past Novemeber things changed. Almost overnight I began to experience extreme abdominal pain. The pain followed eating. Several hours after a meal my gut will start to make very loud and prolonged sounds like unatural gurgling. I will get bulges that move around my abdomen as the food seems to struggle to pass through. Most of the time this is very painful but sometimes, oddly enough, there is no pain just a the gurgling and moving bulges in belly. If it wasn;t so frightening it would be almost humorous to witness. It looks and sounds like an alien trying to escape inside of me. This has been going for over two months. If I dont eat I dont have problems. If I eat little or lightly I have little or light problems. If I eat a whole meal I will have bigger problems. It doesn;t seem to matter what I eat, the pain seems to be directly related to the volume of food I consume. I am experiencing no diarhea or any unusal BM issues. In fact, my BM's seem more regular and healthy than usual. I must comment though that the pain, when at its worst, (which is 3-4 days out of the week), is extreme and absolutley debilitating.
So, I go to the doc and get a CT scan. A narrowing in the small intestine is detected. I go to the GI and he orders more imaging (no results yet, we are now caught up to the present). He tells me that I have a severe Crohn's flare up and that it will require surgery (if the area is hardened and scarred) or a regiment of remicaid infusions. He orders a blood test that can detect how active the disease is (I guess?) It comes back as normal, which he seems perplexed by. That is where I am at now.
It could be that I have been and continue to be in deep denial about having Crohn's, but I am not trying to be. But even now, as I read through many of your stories and experiences, there is some simialiarity, but there really seems to be a disconnect from what I have experienced. Again, I am not trying to convince myself or seek validation that I do not have Crohn's. I just want to know what is wrong with me and I have some reservations about what I am being told.
What do you think? My initial instinct is that I have a mechanical issue (maybe caused by Crohn's). That something is causing a partial blockage, kink, adhesion in my intestine. If the narrowing is being caused by a severe Crohn's flare up, wouldn't the blood test reveal that activity? Hmmmmm.....
