I have had Crohn's Disease. This is something that my family and I have never been through before, and I don't always keep up on all the current trends or anything like that. I found this forum when I was doing research on the 'stealthbelt' which I am NOT going to get. I can't find any sort of reviews on it, plus after reading through some posts on here, I have my own ideas on how to be more discreet with my ileostomy. It's not that I'm embarrassed about it, It's just the lack of education to the public about the disease it's self, and the ways that people survive after surgery.
My story begins when I was 7, I began have very bad bleeding from anus, and extremely bad stomach aches. My mom couldn't figure what was going on, plus I was getting canker sores in my mouth causing me to not eat, which lead to weight loss. My mom took me to my doctor, he had a specialist that was in town, and had him look at me. He said that it might be crohn's but they weren't sure. I was taken to OHSU (Oregon Health Science University). There I was bombarded with tests and doctors. All them saying 'we have never seen this before in someone so young!' After 3 months in the hospital I was released, and went back to school. That was a great summer vacation!
Over the following years until I was about 15, I would always been on my meds of predisone, and sulfasalazine. This made me huge! I then met Dr. Terri, she said that some advancements had been made, and that she had read my file, and now it might not be Crohn's, but UC. I did some test, she said it was UC, I had surgery to form a J-pouch. I lived with an ileostomy for about 3 months. Then it was taken down, and I was 're-connected'. These two surgeries were done by Dr. Patel.
My J-pouch lasted almost 6 years, I then met Dr. Parsons, and he told me that I most certainly had Crohn's, and that is why my J-pouch had been failing, and that I should have a permanent ileostomy put in place. So now here I am in present time, I have my ileostomy, I have lived a good life so far after having it. I have 3 kids, and loving fiance. I play paintball, swim, and tube. I'd like to do more, but I feel 'restricted' at times, and I also want some more discreetness to my ileostomy. I'm hoping that by joining here I can help myself, and help others with what I have done.
My story begins when I was 7, I began have very bad bleeding from anus, and extremely bad stomach aches. My mom couldn't figure what was going on, plus I was getting canker sores in my mouth causing me to not eat, which lead to weight loss. My mom took me to my doctor, he had a specialist that was in town, and had him look at me. He said that it might be crohn's but they weren't sure. I was taken to OHSU (Oregon Health Science University). There I was bombarded with tests and doctors. All them saying 'we have never seen this before in someone so young!' After 3 months in the hospital I was released, and went back to school. That was a great summer vacation!
Over the following years until I was about 15, I would always been on my meds of predisone, and sulfasalazine. This made me huge! I then met Dr. Terri, she said that some advancements had been made, and that she had read my file, and now it might not be Crohn's, but UC. I did some test, she said it was UC, I had surgery to form a J-pouch. I lived with an ileostomy for about 3 months. Then it was taken down, and I was 're-connected'. These two surgeries were done by Dr. Patel.
My J-pouch lasted almost 6 years, I then met Dr. Parsons, and he told me that I most certainly had Crohn's, and that is why my J-pouch had been failing, and that I should have a permanent ileostomy put in place. So now here I am in present time, I have my ileostomy, I have lived a good life so far after having it. I have 3 kids, and loving fiance. I play paintball, swim, and tube. I'd like to do more, but I feel 'restricted' at times, and I also want some more discreetness to my ileostomy. I'm hoping that by joining here I can help myself, and help others with what I have done.
