Hi, my name is Sarah and I was diagnosed with Crohn's disease last month by a new G.I. after struggling with its symptoms for many years and being treated for many other ailments and being told, at times, that there was nothing wrong with me. Since May 2013, I have had 7 surgeries and been hospitalized once, all related to Crohn's, but the diagnosis came after being referred to a G.I. by my correctly surgeon, because according to him, he is a surgeon, not a diagnostician. I am relieved that I finally have a diagnosis, but am left feeling frustrated and not knowing how to proceed with having this diagnosis.
So, what is currently going on with me? I currently have had non-stop pain in my right lower abdominal quadrant that sometimes shoots to the left side of my abdomen. I have had one perirectal fistula and 6 anorectal abscesses. I have diarrhea most of the time, am constantly fatigued, and don't ever feel well. I also sometimes get rashes that mainly appear on the tops of my hands, down my arms, under my arms, and on my chest. I am either not hungry or extremely hungry on a daily basis, and do not eat a normal diet, due to often feeling worse when I eat. I am also diagnosed with asthma, PCOS, severe allergies to both food and drugs, a hiatal hernia and eosinophilic esophagitis. My Crohn's seems to currently be flaring, according to my doctor from my recent endoscopy and colonoscopy, in my TI, rectum, and stomach. I started Delzicol 400mg this past week, and have been experiencing negative side effects to the medication, but do not want to stop it at this point hoping that it will help in the next week and that my body will become used to it. It is also very inconvenient to take due to having to take it at least an hour before eating or 2 hours after eating, which does not work with my busy lifestyle and random retail work schedule. I am also on Flovent HFA (both for asthma and esophagitis) and allergy shots and my G.I. stated she will be working with me on further medication management in the future.
I guess what I am wanting from this forum is to experience other's personal stories and know where to go next. I want to know what y'all did or asked your doctor to both better understand your diagnosis and to help treat your Crohn's shortly after diagnosis and in the years since to maintain some sort of remission. Sometimes I feel like I do not know the right questions to ask, even though there are no right or wrong questions, but I want to seem educated about my disease without overstepping the advice of my doctor. I also want to be happy again and not be so frustrated with all of the symptoms I have and how to manage them. I don't really like the idea of medication management, but I know that it will help me eventually, and may be a way to reach remission and not feel so horrible. I dislike pain medications, but I sometimes feel like this is the only way I get any sleep. Thanks for reading and offering any advice you can.
So, what is currently going on with me? I currently have had non-stop pain in my right lower abdominal quadrant that sometimes shoots to the left side of my abdomen. I have had one perirectal fistula and 6 anorectal abscesses. I have diarrhea most of the time, am constantly fatigued, and don't ever feel well. I also sometimes get rashes that mainly appear on the tops of my hands, down my arms, under my arms, and on my chest. I am either not hungry or extremely hungry on a daily basis, and do not eat a normal diet, due to often feeling worse when I eat. I am also diagnosed with asthma, PCOS, severe allergies to both food and drugs, a hiatal hernia and eosinophilic esophagitis. My Crohn's seems to currently be flaring, according to my doctor from my recent endoscopy and colonoscopy, in my TI, rectum, and stomach. I started Delzicol 400mg this past week, and have been experiencing negative side effects to the medication, but do not want to stop it at this point hoping that it will help in the next week and that my body will become used to it. It is also very inconvenient to take due to having to take it at least an hour before eating or 2 hours after eating, which does not work with my busy lifestyle and random retail work schedule. I am also on Flovent HFA (both for asthma and esophagitis) and allergy shots and my G.I. stated she will be working with me on further medication management in the future.
I guess what I am wanting from this forum is to experience other's personal stories and know where to go next. I want to know what y'all did or asked your doctor to both better understand your diagnosis and to help treat your Crohn's shortly after diagnosis and in the years since to maintain some sort of remission. Sometimes I feel like I do not know the right questions to ask, even though there are no right or wrong questions, but I want to seem educated about my disease without overstepping the advice of my doctor. I also want to be happy again and not be so frustrated with all of the symptoms I have and how to manage them. I don't really like the idea of medication management, but I know that it will help me eventually, and may be a way to reach remission and not feel so horrible. I dislike pain medications, but I sometimes feel like this is the only way I get any sleep. Thanks for reading and offering any advice you can.
I hope that you get your current "flare" under control