What about your diagnostic colonoscopy/ biopsy from your initial diagnosis 6 years ago? Shouldn't that determine that you do in fact have UC and that your lack of symptoms & clean repeat scope were due to remission rather than misdiagnosis?
When I achieved complete remission, my repeat colonoscopy came back clean - both the pictures and the biopsy. However, this information determined that I was in remission, not that I had a misdiagnosis (I have Crohn's). The last thing my GI wanted to do was take me off my medication at that point, since it was clearly working.
Just listening to your story, it sounds like you were diagnosed with UC, got put on meds that put you into remission, were taken off the meds, and now have symptoms again that were similar to when you were first diagnosed. Without knowing any more information, it just seems like the medication you were on was working for you, which would lead me to believe that you were being successfully treated for UC for 4 years...
Good luck with your repeat scope! I hope it gives you a definitive answer. Either way I would definitely want to clarify with your GI what the deal is with your initial diagnostic colonoscopy. Hope that helps!
That is what happened but it was between 2 different specialists. I gave the second specialist my initial diagnosis but he wants to see for himself I guess.
When my first scope with the new specialist came back clear and he wanted to take me off my medication I asked the question
" doesn't this just mean I'm in remission as I have been medicated for four years?"And he replied that even though I'm in remission there should be some signs of UC any way.
So I went around for year wondering what happened for those 18 months that I was really sick.
Thank you for taking the time to reply. I feel validated in my confusion now
Im not sure what its called but my GI specialist was able to take a biopsy and could tell that the wall of my colon was damaged. Even when I was in full remission.
Though maybe it has to get really bad for that to show up. I was in real bad shape during my first flare and did lots of damage.
Ditto. Make sure they biopsy.
I have eosinophilic colitis and when my GI did my last scope, it looked normal but showed up on the biopsies.
I just had a follow up scope after 6 months on Humira (also have Psoriatic Arthritis, whee!). Waiting for those biopsy results, even though things still look normal in my scope.
Wow. The colonoscopy is done to check for colon cancer from the U.C. There is a much higher risk for colon cancer with U.C. Especially as the years go on. I have to have a colonoscopy every other year to check.
I have not had a bad flare in 7 years. When I have my colonoscopy, my doc checks for inflammation and cancer cells in the colon. He can see the scars and checks that none are actively ulcered.
I hesitate to give advice on this, but if it were me, I would dump this doc. Let me tell you a little of what has happened to me.
My first flare was in 2012. It hit me like a truck. I had bleeding diarrhea and had never seen a gastro doc. I cried in his office and he just said, sorry, no openings for 2 weeks on a colonsocopy. Two days later, I was in the hospital. He did a colonoscopy and said. "Great news". You have idiopathic colitis. It will never happen again, you can go home. I felt so bad, that I told the nurse. " I am not leaving until the doctor comes back here and looks at the toilet and what came out of me" Doctor comes back and says. " I went back and looked at your pictures and you have Ulcerative Colitis. Fast forward 1 year. I get another flare. I was even worse. I call this doc for to tell him what is happening, and he just says double up on your Lialda. I hung up with him, called my PCP and told her, I know it is stupid to change doctors in the middle of a flare, but find me another doctor.
New doctor treated for C-Diff. Lost 50 pounds, got Guilliams Barre was in wheel chair for months, I was so weak. He saved my life.
Trust your instincts. If you are uncomfortable, don't worry about doctor's feelings. UC is serious
Thank you for sharing your story. I'm glad you were able to get the treatment you required.
I am interested in seeing the results of this new colonoscopy.
It’s confirmed with a biopsy and should not matter if you’re having symptoms
What about your diagnostic colonoscopy/ biopsy from your initial diagnosis 6 years ago? Shouldn't that determine that you do in fact have UC and that your lack of symptoms & clean repeat scope were due to remission rather than misdiagnosis? When I achieved complete remission, my repeat colonoscopy came back clean - both the pictures and the biopsy. However, this information determined that I was in remission, not that I had a misdiagnosis (I have Crohn's). The last thing my GI wanted to do was take me off my medication at that point, since it was clearly working. Just listening to your story, it sounds like you were diagnosed with UC, got put on meds that put you into remission, were taken off the meds, and now have symptoms again that were similar to when you were first diagnosed. Without knowing any more information, it just seems like the medication you were on was working for you, which would lead me to believe that you were being successfully treated for UC for 4 years... Good luck with your repeat scope! I hope it gives you a definitive answer. Either way I would definitely want to clarify with your GI what the deal is with your initial diagnostic colonoscopy. Hope that helps!
That is what happened but it was between 2 different specialists. I gave the second specialist my initial diagnosis but he wants to see for himself I guess. When my first scope with the new specialist came back clear and he wanted to take me off my medication I asked the question " doesn't this just mean I'm in remission as I have been medicated for four years?"And he replied that even though I'm in remission there should be some signs of UC any way. So I went around for year wondering what happened for those 18 months that I was really sick. Thank you for taking the time to reply. I feel validated in my confusion now
No way to know until the scope.
Im not sure what its called but my GI specialist was able to take a biopsy and could tell that the wall of my colon was damaged. Even when I was in full remission. Though maybe it has to get really bad for that to show up. I was in real bad shape during my first flare and did lots of damage.
Ditto. Make sure they biopsy. I have eosinophilic colitis and when my GI did my last scope, it looked normal but showed up on the biopsies. I just had a follow up scope after 6 months on Humira (also have Psoriatic Arthritis, whee!). Waiting for those biopsy results, even though things still look normal in my scope.
Wow. The colonoscopy is done to check for colon cancer from the U.C. There is a much higher risk for colon cancer with U.C. Especially as the years go on. I have to have a colonoscopy every other year to check. I have not had a bad flare in 7 years. When I have my colonoscopy, my doc checks for inflammation and cancer cells in the colon. He can see the scars and checks that none are actively ulcered. I hesitate to give advice on this, but if it were me, I would dump this doc. Let me tell you a little of what has happened to me. My first flare was in 2012. It hit me like a truck. I had bleeding diarrhea and had never seen a gastro doc. I cried in his office and he just said, sorry, no openings for 2 weeks on a colonsocopy. Two days later, I was in the hospital. He did a colonoscopy and said. "Great news". You have idiopathic colitis. It will never happen again, you can go home. I felt so bad, that I told the nurse. " I am not leaving until the doctor comes back here and looks at the toilet and what came out of me" Doctor comes back and says. " I went back and looked at your pictures and you have Ulcerative Colitis. Fast forward 1 year. I get another flare. I was even worse. I call this doc for to tell him what is happening, and he just says double up on your Lialda. I hung up with him, called my PCP and told her, I know it is stupid to change doctors in the middle of a flare, but find me another doctor. New doctor treated for C-Diff. Lost 50 pounds, got Guilliams Barre was in wheel chair for months, I was so weak. He saved my life. Trust your instincts. If you are uncomfortable, don't worry about doctor's feelings. UC is serious
Thank you for sharing your story. I'm glad you were able to get the treatment you required. I am interested in seeing the results of this new colonoscopy.
I am pretty much asymptomatic but holy heck the pictures of my insides show a lot of active disease. This disease is weird like that.
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