Before I was diagnosed in 2006, I had been having stomach issues for years, probably since late high school. The big symptom was bleeding. Probably in late 2005, I started getting a lot pf pain and it was accompanied by a lot of nausea. Finally, I was able to see a gastro specialist and after a colonoscopy and upper endoscopy, I was diagnosed with Crohn's. Because of all the vomiting over the past year, I had a hiatal hernia and serious acid reflux issues. I was prescribed Entocort and Pentassa, along with folic acid, omeprazole, and iron.
Since 2006, I've had a few drug changes as my "counts" have crept back up. After two years on Pentassa, I was switched to Lialda, pulled from Entocort and given Azathioprine for the first time in 2008. I also had serious drops in my hemoglobin. I started iron infusions, since the iron pills weren't being absorbed. My hemoglobin would go up for a few months and then crash again.
After my second colonoscopy in 2010, my doctor put me on the biologic drugs. I started Remicade in January 2011 and went through two doses (the start-up phase) and my skin reaction was so bad, I couldn't continue on with it. He switched me to Cimzia and I managed that for almost seven months until my "counts" went back up again. The last drug switch was in October 2011 when he put me onto Humira and I've had decent luck with that and my CRP is still good, which is a blessing to me.
I was hospitalized once last year for a bowel obstruction that thankfully cleared without a need for surgery. I had an ER visit the year before during a massive flare-up and was introduced to Prednisone. I was given Prednisone with the Remicade infusion and have been on it since January 2011. I only take predisone before and after my Humira injections (to prevent the same skin reaction) and seem to be doing fine on it. I've been on Azathioprine for the better part of five years, starting at 50 mg and now in 200 mg daily doses.
Last fall, my hemoglobin dropped to 7.9, which is extraordinarily low. Because my options were limited at the time - I am a difficult IV pick patient - I had a PICC line inserted. At the local hospital here, I was on the cold metal table for almost three hours before the radiologist said he couldn't do it and left, leaving me in tears. I went to a bigger hospital in my hometown and managed to get the procedure done and had my iron infusions and blood transfusions. Unfortunately, my hemoglobin only normalized for maybe a month before dropping back below 12 again. I had my latest round of infusions in May/June this year after my hemo dropped below 10 again. My latest number was 12.4, but I have no hope it'll stay that high. My iron absorption rate is just too low, even on iron tabs and eating a lot of iron-rich foods.
I just had a capsule endoscopy done on Monday, so I'm awaiting my test results. My hematologist asked for one after my frequency of needing iron and blood increased. I've been okay, otherwise. I have mild flares day-to-day, which can be maintained (I am stronger than my pain). Mostly, I'm just trying to get back into remission, which has been a struggle over the past two years. My biggest struggles have been with pain and trying to maintain my hemoglobin and red blood cell levels, which I figure I'll struggle with for the rest of my life.
In reading other stories, I realize that everyone with Crohn's is different and we all have differing reactions to different medications and procedures. I live in a small, rural town in the middle of nowhere and there is very little support, so being here is actually a step forward for me. Thank you reading my story and I wish you all well.
Since 2006, I've had a few drug changes as my "counts" have crept back up. After two years on Pentassa, I was switched to Lialda, pulled from Entocort and given Azathioprine for the first time in 2008. I also had serious drops in my hemoglobin. I started iron infusions, since the iron pills weren't being absorbed. My hemoglobin would go up for a few months and then crash again.
After my second colonoscopy in 2010, my doctor put me on the biologic drugs. I started Remicade in January 2011 and went through two doses (the start-up phase) and my skin reaction was so bad, I couldn't continue on with it. He switched me to Cimzia and I managed that for almost seven months until my "counts" went back up again. The last drug switch was in October 2011 when he put me onto Humira and I've had decent luck with that and my CRP is still good, which is a blessing to me.
I was hospitalized once last year for a bowel obstruction that thankfully cleared without a need for surgery. I had an ER visit the year before during a massive flare-up and was introduced to Prednisone. I was given Prednisone with the Remicade infusion and have been on it since January 2011. I only take predisone before and after my Humira injections (to prevent the same skin reaction) and seem to be doing fine on it. I've been on Azathioprine for the better part of five years, starting at 50 mg and now in 200 mg daily doses.
Last fall, my hemoglobin dropped to 7.9, which is extraordinarily low. Because my options were limited at the time - I am a difficult IV pick patient - I had a PICC line inserted. At the local hospital here, I was on the cold metal table for almost three hours before the radiologist said he couldn't do it and left, leaving me in tears. I went to a bigger hospital in my hometown and managed to get the procedure done and had my iron infusions and blood transfusions. Unfortunately, my hemoglobin only normalized for maybe a month before dropping back below 12 again. I had my latest round of infusions in May/June this year after my hemo dropped below 10 again. My latest number was 12.4, but I have no hope it'll stay that high. My iron absorption rate is just too low, even on iron tabs and eating a lot of iron-rich foods.
I just had a capsule endoscopy done on Monday, so I'm awaiting my test results. My hematologist asked for one after my frequency of needing iron and blood increased. I've been okay, otherwise. I have mild flares day-to-day, which can be maintained (I am stronger than my pain). Mostly, I'm just trying to get back into remission, which has been a struggle over the past two years. My biggest struggles have been with pain and trying to maintain my hemoglobin and red blood cell levels, which I figure I'll struggle with for the rest of my life.
In reading other stories, I realize that everyone with Crohn's is different and we all have differing reactions to different medications and procedures. I live in a small, rural town in the middle of nowhere and there is very little support, so being here is actually a step forward for me. Thank you reading my story and I wish you all well.
I take it the capsule endoscopy is to check what is happening higher up in the GI tract? When is the appt booked to get the results? During the flare ups you are getting is bleeding still a symptom you get?
