- Joined
- Apr 17, 2011
- Messages
- 7
Frustrating....I wrote a whole post and was just about to enter it, when I apparently pushed a wrong button and lost the whole post. So, here we go again!
I am 43. I have 2 daughters (20 and 22). They are both off at college. I have been unable to work for almost 3 years. I had a strong work history up until then. Had never lost a job, had many promotions. I was very proud to be a working mom, successful both in the workplace, and at raising my daughters. Then, I started to get very ill, and lost 3 jobs in a 2 year period, due to absenteeism and low productivity.
I began to have symptoms in 2005, but was not diagnosed with Crohn's until April of 2008. Several factors played into the delayed diagnosis, including a few misdiagnoses, moving to a new town, having limited access to a GI doc in my new town, and doctors, pathologists, radiologists and labs not communicating well between themselves. There were quite a few indicators of Crohn's disease, but no one put it all together. My primary care provider finally ordered a Prometheus test in March of 2008, which came back positive for active Crohn's disease.
I always had a "sensitive" stomach. I watched my diet, and tried to stay away from foods that I thought caused my diahrea (been years, and I still can't spell that stupid word). I was going through a very stressful divorce in early 2005. In June of 2005, I started having severe abdominal pain (in the area of the ileum), bloating, and (sorry for the TMI), leaky intestines. (I would wake up in the morning to find that I had pooped myself in my sleep). I lost 45 pounds in 2 months, and was in the hospital for 2 weeks (including 4 days in ICU). The diagnosis at that time was diverticulitis. (huh? I thought only "old" people got that)
Shortly after my stay in the hospital, I moved from Seattle to a small town 3 and 1/2 hours away. I continued to have severe abdominal pain and diahrrea. In November 2005, they did surgery for suspected appendicitis. They found an appendix that had hardened from chronic inflammation, and inflammed intestinal tissue surrounding the appendix. They took out the appendix and about 3 inches of intestine in the surrounding area. The pathoulogy report indicated that there was a chronic inflammatory process that should be further evaluated, but neither of the doctors (surgeon and primary care provider) read the report or followed up as suggested.
In 2006, I developed severe sores in my mouth. I thought I had contracted a virus, but the doc wanted to be sure, so I went to an ear, nose and throat specialist. He removed a lesion from the end of my tongue, and biopsied two of the sores in my mouth. The pathology report came back, and it indicated that the sores were "consistent with crohn's disease". Neither of the doctors followed up.
I was in and out of the hospital from 2005 to early 2008. I had every test imaginable (bloodwork, stool samples, ct scans, small bowel follow through, colonoscopy, endoscopy) Nothing came back with a definitive answer, other than "inflammatory process".
Finally, in March 2008, my primary care doc threw a "Hail Mary", and ordered a Prometheus test. It came back positive for active Crohns disease.
We went through quite a few medications, found that I was allergic to some and couldn't tolerate others. So, they put me on Remicade in June 2008. The Remicade did wonders. I wasn't completely in remission, but the symptoms were tolerable and I was able to get out and do things with friends, I had energy for the first time in several years.
It was great while it lasted. Last September (2010), I had a severe reaction to the Remicade. I had painful tingling (like when your foot goes to sleep), in all of my extremities, and had extremely bad vertigo. Just rolling over in bed, it felt as if the room were dropping out frm under me. I was sent to see a neurologist at the University of Washington. My MRI showed abnormal lesions in my brain. So, no more remicade, and I can't have any other biologics. I had a second MRI in March, and it still shows abnormal lesions. So, we are waiting until August, and doing a 3rd MRI. We'll see how it goes. a little scary, but I try my best not to think about it. I kinda figure if the neurologist isn't freaking out about it and is asking me come back in 5 months (rather than 2 or 3 weeks), then he can't be TOO concerned about it, can he?
I was referred to a GI doc at the UW. She wanted to put me on Imuran. I read up on it, and really didn't want to take it. So, I asked for a second opinion from another GI at the UW. He agreed with the first GI, that Imuran would be a good choice. In the meantime, while I was waiting to get in to athe GI docs at the UW, my primary care provider put me on Pentasa. It gave me really severe abdominal cramping and bloating (worse than that I experience from crohn's). So I went off of it. But, at my next appointment, my primary care doc suggested that I go back on the Pentasa, and take Bentyl with it to control the cramping and bloaating. It worked! So, I was starting to feel the best I had felt in a very long time.
I went to a follow up appointment with my GI. She told me that the Pentasa has a poor track record for maintaining remission. She still wanted me to go on Imuran. I finally agreed to try it, and began at 50 mg once a day, about 10 days ago. Within the first 2 hours after taking the Imuran, I started to experience side effects. Elevated heart rate, sweats, headaches, extreme fatigue and horrible pain in my joints. I can barely get out of bed. The GI doc told me to hang in there, the side effects will get better. But it hasn't, and I am miserable, and I am wondering "how long do I put up with this"?
Which brought me to this forum. I was looking for other people's experience with Imuran, and my search brought me to this wonderful resource. I am so glad I found you! Not only can I see what other people have experienced with this medication, I can also see what others experiences are with crohn's disease. I feel like there are people out there who can understand what I am going through.
If you have finished reading this, I want to thank you so much for listening (reading). I know I wrote A LOT. It felt good to get it all out there. Thank you, thank you, thank you!
Brenda
43 years old
Crohn's disease
Diagnosed 2008
I am 43. I have 2 daughters (20 and 22). They are both off at college. I have been unable to work for almost 3 years. I had a strong work history up until then. Had never lost a job, had many promotions. I was very proud to be a working mom, successful both in the workplace, and at raising my daughters. Then, I started to get very ill, and lost 3 jobs in a 2 year period, due to absenteeism and low productivity.
I began to have symptoms in 2005, but was not diagnosed with Crohn's until April of 2008. Several factors played into the delayed diagnosis, including a few misdiagnoses, moving to a new town, having limited access to a GI doc in my new town, and doctors, pathologists, radiologists and labs not communicating well between themselves. There were quite a few indicators of Crohn's disease, but no one put it all together. My primary care provider finally ordered a Prometheus test in March of 2008, which came back positive for active Crohn's disease.
I always had a "sensitive" stomach. I watched my diet, and tried to stay away from foods that I thought caused my diahrea (been years, and I still can't spell that stupid word). I was going through a very stressful divorce in early 2005. In June of 2005, I started having severe abdominal pain (in the area of the ileum), bloating, and (sorry for the TMI), leaky intestines. (I would wake up in the morning to find that I had pooped myself in my sleep). I lost 45 pounds in 2 months, and was in the hospital for 2 weeks (including 4 days in ICU). The diagnosis at that time was diverticulitis. (huh? I thought only "old" people got that)
Shortly after my stay in the hospital, I moved from Seattle to a small town 3 and 1/2 hours away. I continued to have severe abdominal pain and diahrrea. In November 2005, they did surgery for suspected appendicitis. They found an appendix that had hardened from chronic inflammation, and inflammed intestinal tissue surrounding the appendix. They took out the appendix and about 3 inches of intestine in the surrounding area. The pathoulogy report indicated that there was a chronic inflammatory process that should be further evaluated, but neither of the doctors (surgeon and primary care provider) read the report or followed up as suggested.
In 2006, I developed severe sores in my mouth. I thought I had contracted a virus, but the doc wanted to be sure, so I went to an ear, nose and throat specialist. He removed a lesion from the end of my tongue, and biopsied two of the sores in my mouth. The pathology report came back, and it indicated that the sores were "consistent with crohn's disease". Neither of the doctors followed up.
I was in and out of the hospital from 2005 to early 2008. I had every test imaginable (bloodwork, stool samples, ct scans, small bowel follow through, colonoscopy, endoscopy) Nothing came back with a definitive answer, other than "inflammatory process".
Finally, in March 2008, my primary care doc threw a "Hail Mary", and ordered a Prometheus test. It came back positive for active Crohns disease.
We went through quite a few medications, found that I was allergic to some and couldn't tolerate others. So, they put me on Remicade in June 2008. The Remicade did wonders. I wasn't completely in remission, but the symptoms were tolerable and I was able to get out and do things with friends, I had energy for the first time in several years.
It was great while it lasted. Last September (2010), I had a severe reaction to the Remicade. I had painful tingling (like when your foot goes to sleep), in all of my extremities, and had extremely bad vertigo. Just rolling over in bed, it felt as if the room were dropping out frm under me. I was sent to see a neurologist at the University of Washington. My MRI showed abnormal lesions in my brain. So, no more remicade, and I can't have any other biologics. I had a second MRI in March, and it still shows abnormal lesions. So, we are waiting until August, and doing a 3rd MRI. We'll see how it goes. a little scary, but I try my best not to think about it. I kinda figure if the neurologist isn't freaking out about it and is asking me come back in 5 months (rather than 2 or 3 weeks), then he can't be TOO concerned about it, can he?
I was referred to a GI doc at the UW. She wanted to put me on Imuran. I read up on it, and really didn't want to take it. So, I asked for a second opinion from another GI at the UW. He agreed with the first GI, that Imuran would be a good choice. In the meantime, while I was waiting to get in to athe GI docs at the UW, my primary care provider put me on Pentasa. It gave me really severe abdominal cramping and bloating (worse than that I experience from crohn's). So I went off of it. But, at my next appointment, my primary care doc suggested that I go back on the Pentasa, and take Bentyl with it to control the cramping and bloaating. It worked! So, I was starting to feel the best I had felt in a very long time.
I went to a follow up appointment with my GI. She told me that the Pentasa has a poor track record for maintaining remission. She still wanted me to go on Imuran. I finally agreed to try it, and began at 50 mg once a day, about 10 days ago. Within the first 2 hours after taking the Imuran, I started to experience side effects. Elevated heart rate, sweats, headaches, extreme fatigue and horrible pain in my joints. I can barely get out of bed. The GI doc told me to hang in there, the side effects will get better. But it hasn't, and I am miserable, and I am wondering "how long do I put up with this"?
Which brought me to this forum. I was looking for other people's experience with Imuran, and my search brought me to this wonderful resource. I am so glad I found you! Not only can I see what other people have experienced with this medication, I can also see what others experiences are with crohn's disease. I feel like there are people out there who can understand what I am going through.
If you have finished reading this, I want to thank you so much for listening (reading). I know I wrote A LOT. It felt good to get it all out there. Thank you, thank you, thank you!
Brenda
43 years old
Crohn's disease
Diagnosed 2008
