Hi Everyone, I'm at my wit's end.
I am a 28 year old female and I've been suffering from intense pain, gas, bloating, alternating constipation and diarrhea for 8 years. I was diagnosed first with IBS after an endoscopy, colonoscopy, barium enema, etc. After 6 years of failed medications (bentyl, levsin, zelnorm, etc) and uncontrolled symptoms, I was diagnosed by another gastro with UC, after biopsies of my colonoscopy showed inflammation. I also have acid reflux, occasional stomach ulcers, hemorrhoids, hiatal hernia and gallstones. But none of these other issues have caused serious complications. Asacol worked for a while. Now, a few years later, I started having problems again, and I was hospitalized for severe diarrhea for a few weeks in February. After another endosc/colonosc and stool samples showed no bleeding or ulceration, they concluded it was due to an antibiotic i took for a sinus infection and sent me on my way. My personal gastro stopped being responsive to my calls, and i was left with uncontrolled bowel activity and pain that asacol was not helping. I recently was sent back to the ER by my primary care doc because of my severe pain, I was given more narcotics and referred to a new gastro. This NEW gastro doesnt believe I have UC because I dont have bleeding, although my recent biopsy showed inflammation from an unknown source. He won't even consider a different type of colitis. A blood test he performed indicated I may have Crohn's, but again, no other major issues were seen during the endosc/colonosc aside from a fungal infection and h. pylori, indicating i am immunocompromised--which has been obvious the last 8 years- I get infections all the time. This gastro is content with not giving me a diagnosis. It's like all he knows are IBS, Crohn's and UC, and i dont fit perfectly into any of those boxes. He wants to perform the pill camera test, but I'm frustrated with him and don't feel like he will get an answer.
Since I live in the DC/MD/VA area, I want to take advantage of the expertise at John's Hopkins. I feel like a patient on the show "mystery diagnosis" and I need someone to give me an explanation, because obviously I'm not a textbook case of any of the gastro diseases. Digestive problems run in my family, and I know it's something. I talked to John's Hopkins and am in the process of gathering my medical records to take with me. I'm just not sure which dr to choose up there. Has anyone had experience with any of them? I'm so frustrated and tired of being sick with no one understanding and no consistent diagnosis. I'm sick and tired and in pain and all I can do now is take vicodin (which barely works since i was given so much dilaudid in the hospital) and sleep. PLEASE HELP.
Thank you all and God bless,
E
I am a 28 year old female and I've been suffering from intense pain, gas, bloating, alternating constipation and diarrhea for 8 years. I was diagnosed first with IBS after an endoscopy, colonoscopy, barium enema, etc. After 6 years of failed medications (bentyl, levsin, zelnorm, etc) and uncontrolled symptoms, I was diagnosed by another gastro with UC, after biopsies of my colonoscopy showed inflammation. I also have acid reflux, occasional stomach ulcers, hemorrhoids, hiatal hernia and gallstones. But none of these other issues have caused serious complications. Asacol worked for a while. Now, a few years later, I started having problems again, and I was hospitalized for severe diarrhea for a few weeks in February. After another endosc/colonosc and stool samples showed no bleeding or ulceration, they concluded it was due to an antibiotic i took for a sinus infection and sent me on my way. My personal gastro stopped being responsive to my calls, and i was left with uncontrolled bowel activity and pain that asacol was not helping. I recently was sent back to the ER by my primary care doc because of my severe pain, I was given more narcotics and referred to a new gastro. This NEW gastro doesnt believe I have UC because I dont have bleeding, although my recent biopsy showed inflammation from an unknown source. He won't even consider a different type of colitis. A blood test he performed indicated I may have Crohn's, but again, no other major issues were seen during the endosc/colonosc aside from a fungal infection and h. pylori, indicating i am immunocompromised--which has been obvious the last 8 years- I get infections all the time. This gastro is content with not giving me a diagnosis. It's like all he knows are IBS, Crohn's and UC, and i dont fit perfectly into any of those boxes. He wants to perform the pill camera test, but I'm frustrated with him and don't feel like he will get an answer.
Since I live in the DC/MD/VA area, I want to take advantage of the expertise at John's Hopkins. I feel like a patient on the show "mystery diagnosis" and I need someone to give me an explanation, because obviously I'm not a textbook case of any of the gastro diseases. Digestive problems run in my family, and I know it's something. I talked to John's Hopkins and am in the process of gathering my medical records to take with me. I'm just not sure which dr to choose up there. Has anyone had experience with any of them? I'm so frustrated and tired of being sick with no one understanding and no consistent diagnosis. I'm sick and tired and in pain and all I can do now is take vicodin (which barely works since i was given so much dilaudid in the hospital) and sleep. PLEASE HELP.
Thank you all and God bless,
E
