Hi everyone 
I thought I'd share my story. I'm 28 years old and I've been having GI problems for about 6 years. Things started out with mild stomach aches, bloating and gas. Over the next couple of years my symptoms progressed to bloody stools, diarrhea several times a day and very painful stomach aches that just wouldn't go away. I saw a GI dr who did a colonoscopy and sent me on my way, saying things looked ok and not to worry. I had always been perfectly healthy before these problems and I wanted to believe I was ok, so I tried to just manage these symptoms and carried on with my life. Fast forward about 2 years after that first colonoscopy. My same GI symptoms had continued and I was starting to have increased abdominal pain so I returned to my GI dr who was still not concerned with my symptoms, but who did a second colonoscopy at my request. Immediately after the colonoscopy he came to the recovery room and said, with a completely shocked look on his face, "You have Crohn's disease." I decided shortly after this that since I had insurance thru the Cleveland Clinic that I should transfer my care and find a new dr there.
When I requested my medical records to be sent to the Clinic I was able to read my previous GI dr's notes, my very first colonoscopy had revealed "chronic inflammation." This wasn't ever mentioned to me, I had been told everything look "ok." Chronic inflammation is not normal! I was very upset. So, in December I was fortunate to meet the most amazing GI dr and he has been managing my care since. Unfortunately, my disease had progressed to moderate to severe Crohn's by the time I found my new dr and we are having trouble finding a treatment that will work for me. Since Dec I have lost a total of approx 40 lbs, and at 5'10 I weighed 106 lbs at my lightest, I looked like a walking skeleton. I am a nurse and was trying to work physically demanding 12 hour shifts, I could hardly walk the length of the hall at work without feeling fatigued and like I was going to pass out. Around this time my stomach aches had turned into debilitating abdominal pain and I spent my days off of work either stuck in bed or on the couch and would take tylenol around the clock to get thru my work shifts, it only mildly helped.
When the nausea/vomiting/chills kicked in I realized that I was actually sicker than a lot of the patients that I was trying to care for, and I ended up being off work for about 5 months. I don't think I left my house during all those months off work, I was so sick and weak I was pretty much stuck in bed. Thru this time I have tried entocort, pentasa, cimzia, and remicade; none of which have made any difference. I just started Imuran almost 2 months ago, so I am waiting and hoping that this medicine will work for me. I'm on prednisone to carry me thru until the imuran kicks in. But every time I taper down to around 20-30mg of pred I end up with a bowel obstruction and end up in the hospital, I've had 3 so far. I end up being admitted for about 3-5 days and being pumped full of IV steroids and then sent on my way for a couple more months.
As to why I haven't had surgery yet, my dr says I have such a large amount of bowel that is inflammed that we are trying everything medically before surgery, and for this I am thankful. But I have met with the surgeon and understand that if the Imuran doesn't work, then it will be time for surgery. And I guess I'm ready, I'm so tired of being in pain every day and being nervous about going to work and how I'm going to feel throughout my shift. I've been able to gain back about 15 lbs, so I look better, but pain is a daily struggle for me. I am very lucky to have an amazing, supportive husband who is also a nurse and a family who has helped me beyond words to get through all of this. I'm sorry this is so long, I've never done anything like this before. Thank you for reading this
I thought I'd share my story. I'm 28 years old and I've been having GI problems for about 6 years. Things started out with mild stomach aches, bloating and gas. Over the next couple of years my symptoms progressed to bloody stools, diarrhea several times a day and very painful stomach aches that just wouldn't go away. I saw a GI dr who did a colonoscopy and sent me on my way, saying things looked ok and not to worry. I had always been perfectly healthy before these problems and I wanted to believe I was ok, so I tried to just manage these symptoms and carried on with my life. Fast forward about 2 years after that first colonoscopy. My same GI symptoms had continued and I was starting to have increased abdominal pain so I returned to my GI dr who was still not concerned with my symptoms, but who did a second colonoscopy at my request. Immediately after the colonoscopy he came to the recovery room and said, with a completely shocked look on his face, "You have Crohn's disease." I decided shortly after this that since I had insurance thru the Cleveland Clinic that I should transfer my care and find a new dr there. When I requested my medical records to be sent to the Clinic I was able to read my previous GI dr's notes, my very first colonoscopy had revealed "chronic inflammation." This wasn't ever mentioned to me, I had been told everything look "ok." Chronic inflammation is not normal! I was very upset. So, in December I was fortunate to meet the most amazing GI dr and he has been managing my care since. Unfortunately, my disease had progressed to moderate to severe Crohn's by the time I found my new dr and we are having trouble finding a treatment that will work for me. Since Dec I have lost a total of approx 40 lbs, and at 5'10 I weighed 106 lbs at my lightest, I looked like a walking skeleton. I am a nurse and was trying to work physically demanding 12 hour shifts, I could hardly walk the length of the hall at work without feeling fatigued and like I was going to pass out. Around this time my stomach aches had turned into debilitating abdominal pain and I spent my days off of work either stuck in bed or on the couch and would take tylenol around the clock to get thru my work shifts, it only mildly helped.
When the nausea/vomiting/chills kicked in I realized that I was actually sicker than a lot of the patients that I was trying to care for, and I ended up being off work for about 5 months. I don't think I left my house during all those months off work, I was so sick and weak I was pretty much stuck in bed. Thru this time I have tried entocort, pentasa, cimzia, and remicade; none of which have made any difference. I just started Imuran almost 2 months ago, so I am waiting and hoping that this medicine will work for me. I'm on prednisone to carry me thru until the imuran kicks in. But every time I taper down to around 20-30mg of pred I end up with a bowel obstruction and end up in the hospital, I've had 3 so far. I end up being admitted for about 3-5 days and being pumped full of IV steroids and then sent on my way for a couple more months.
As to why I haven't had surgery yet, my dr says I have such a large amount of bowel that is inflammed that we are trying everything medically before surgery, and for this I am thankful. But I have met with the surgeon and understand that if the Imuran doesn't work, then it will be time for surgery. And I guess I'm ready, I'm so tired of being in pain every day and being nervous about going to work and how I'm going to feel throughout my shift. I've been able to gain back about 15 lbs, so I look better, but pain is a daily struggle for me. I am very lucky to have an amazing, supportive husband who is also a nurse and a family who has helped me beyond words to get through all of this. I'm sorry this is so long, I've never done anything like this before. Thank you for reading this
