A few days after the capsule endoscopy I got the results from my doctor. He gave me a report with some amazing color pictures attached. I will have to figure out a way to post a picture or two. This is what the report said:
Reason For Referral:
Abdominal pain, rule out Crohn's Disease
Procedure Data:
Small bowel passage time: 2 hours 49 minutes
Procedure Info & Findings:
The patient swallowed the capsule without difficulty
-Found moderate to severe jejunitis and ileitis with relative sparing of the duodenum.
-Jejunal and ileal mucosa appear erythematous, edematous with multiple erosions and ulcers. -The capsule was seen passing into the cecum.
Summary & Recommendations:
Findings consistent with Crohn's enteritis
So Crohn's it was and Crohn's it is and Crohn's it ever shall be.
* From thefreedictionary.com
erythema- Redness of the skin caused by dilatation and congestion of the capillaries, often a sign of inflammation or infection.
edema - An excessive accumulation of serous fluid in tissue spaces or a body cavity.
Showing posts with label Diagnosis. Show all posts
Showing posts with label Diagnosis. Show all posts
Saturday, October 17, 2009
Thursday, October 15, 2009
Capsule Endoscopy
After trying Pentasa and Entocort, my doctor thought it would be a good idea to have a capsule endoscopy.
The prep was much like a colonoscopy prep so I was up most of the night, you know, prepping. I went in to the office in the morning and they put a belt around my waist with a monitor attached to it. The nurse glued some sensors to my abdomen and turned the monitor on. She then activated the camera pill and made sure it was synced up to the monitor. I was a bit nervous about getting the pill down but I swallowed it with no problems.
I left the doctor's office and decided to go home instead of the office. I had been up all night and was exhausted. I was also nervous about getting on the subway - that monitor belt looked a little bit like a bomb, especially with the light that blinked in time with the flash on the camera pill. The nurse told me not to eat or drink anything for a while (I can't remember how long but it wasn't too bad). They also told me not to lie down as it inhibits the passage of the pill. As long as I didn't have any pain and the light kept blinking, I just had to come back to the office eight hours later to return the monitor.
The worst part of the whole experience was staying upright. I wanted to sleep so badly but I had to prop myself up on a stack of pillows and it just wasn't working out. I did experience some sharp pain high up on the left side of my abdomen several hours after I'd swallowed the pill but the pain wasn't enough to cause me much concern.
I returned the monitor eight hours after I had swallowed the camera pill and that was that. Aside from the prep, it was really easy. Like I said, the worst part was the damage it did to my nap time.
The prep was much like a colonoscopy prep so I was up most of the night, you know, prepping. I went in to the office in the morning and they put a belt around my waist with a monitor attached to it. The nurse glued some sensors to my abdomen and turned the monitor on. She then activated the camera pill and made sure it was synced up to the monitor. I was a bit nervous about getting the pill down but I swallowed it with no problems.
I left the doctor's office and decided to go home instead of the office. I had been up all night and was exhausted. I was also nervous about getting on the subway - that monitor belt looked a little bit like a bomb, especially with the light that blinked in time with the flash on the camera pill. The nurse told me not to eat or drink anything for a while (I can't remember how long but it wasn't too bad). They also told me not to lie down as it inhibits the passage of the pill. As long as I didn't have any pain and the light kept blinking, I just had to come back to the office eight hours later to return the monitor.
The worst part of the whole experience was staying upright. I wanted to sleep so badly but I had to prop myself up on a stack of pillows and it just wasn't working out. I did experience some sharp pain high up on the left side of my abdomen several hours after I'd swallowed the pill but the pain wasn't enough to cause me much concern.
I returned the monitor eight hours after I had swallowed the camera pill and that was that. Aside from the prep, it was really easy. Like I said, the worst part was the damage it did to my nap time.
Monday, October 12, 2009
Diagnosis
I returned to Dr. C's office a week later for a colonoscopy. The biopsies taken during the colonoscopy confirmed inflammation in the ileum consistent with Crohn's Disease.
I definitely experienced diagnosis euphoria. I was ecstatic. After years of uncertainty I finally, finally knew what was wrong with me. I have Crohn's Disease! There are treatments available! I'm going to get better! I'm going to get my life back!
Some doctors start off with steroids or biologics and, once the patient is in remission, they lessen the intensity of the treatment. My doctor follows a "bottom up" approach to treatment. He begins with the pills which are least likely to cause side effects and uses biologics as a last resort.
Before my diagnosis I had taken Flagyl, Welchol and Effexor. The new plan was to try several medications, one at a time. If they failed, we would begin combining those medications until we ran out of options. If I got that far and I wasn't doing better I would try biologics.
A diagnosis and a plan!
I definitely experienced diagnosis euphoria. I was ecstatic. After years of uncertainty I finally, finally knew what was wrong with me. I have Crohn's Disease! There are treatments available! I'm going to get better! I'm going to get my life back!
Some doctors start off with steroids or biologics and, once the patient is in remission, they lessen the intensity of the treatment. My doctor follows a "bottom up" approach to treatment. He begins with the pills which are least likely to cause side effects and uses biologics as a last resort.
Before my diagnosis I had taken Flagyl, Welchol and Effexor. The new plan was to try several medications, one at a time. If they failed, we would begin combining those medications until we ran out of options. If I got that far and I wasn't doing better I would try biologics.
A diagnosis and a plan!
Sunday, October 11, 2009
Dr. Crohn's
Occasionally, things just work out perfectly in my life. A little over a year ago, the day after my stool samples went missing, I found a fantastic Gastroenterologist. We will call him Dr. Crohn's. I was referred by a patient of Dr. C's who knew a little bit about my struggle.
My first visit to Dr. C's office blew my mind. I had faxed my medical records to Dr. C before my appointment and he READ THEM BEFORE I GOT THERE! I told my story in his office and he listened to every word. He didn't interrupt me or snicker. He didn't give me the creeps or suggest that I have the same old tests done. He listened. He listened until I finished then asked me a few questions. Then Dr. C did something that really affected me. He sat at his desk and wrote out a list of a few things that may have been going on with me. He proceeded to go through the list and explain why each of the items on the list were likely or unlikely and then told me that he thought it was Crohn's and he would like to do a colonoscopy to investigate further.
I'm not sure why I was so affected by that list. It may have been because all of the doctor's I had seen were so secretive or because they were always in such a hurry but that list really got to me. I left the office feeling validated, hopeful and confident in my new doctor.
My first visit to Dr. C's office blew my mind. I had faxed my medical records to Dr. C before my appointment and he READ THEM BEFORE I GOT THERE! I told my story in his office and he listened to every word. He didn't interrupt me or snicker. He didn't give me the creeps or suggest that I have the same old tests done. He listened. He listened until I finished then asked me a few questions. Then Dr. C did something that really affected me. He sat at his desk and wrote out a list of a few things that may have been going on with me. He proceeded to go through the list and explain why each of the items on the list were likely or unlikely and then told me that he thought it was Crohn's and he would like to do a colonoscopy to investigate further.
I'm not sure why I was so affected by that list. It may have been because all of the doctor's I had seen were so secretive or because they were always in such a hurry but that list really got to me. I left the office feeling validated, hopeful and confident in my new doctor.
Monday, September 14, 2009
Results
This is the report I received after my first colonoscopy in 2005.
The duodenal biopsies performed were completely normal; there was absolutely no evidence that you have or ever had giardiasis. There were no features of a malabsorptive illness such as gluten sensitive enteropathy. The biopsies were normal.
The biopsies of your colon did reveal some mild resolving inflammation consistent with acute self-limited colitis. This condition is secondary to a viral or bacterial colonic infection which is acquired by consuming contaminated food or water. It is extraordinarily common. Thirty percent of patients may develop persistent symptoms that can last as long as twelve weeks.
My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.
In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice. In rare instances, repeat colonoscopy with biopsy is necessary to be certain that occult inflammatory bowel disease, Crohn's Disease, had not presented itself in an unusual fashion.
My clinical impression is that you will become completely well over the next several weeks to months and should have no long-term difficulties. I know this is frustrating to you if your symptoms persist, but I can not change that.
A copy of this letter with this information has been forwarded to your primary care physician, Dr. _________, along with your colonoscopy, endoscopy and pathology reports.
Reading this letter again now, it seems perfectly reasonable. I now know that it often takes years for a Crohn's diagnosis. I know that Crohn's is not always detected through a colonoscopy and my misdiagnosis was the norm. However, at the time I was frustrated, sick, broke and unhappy with my experience.
The GI doctor I saw rarely listened to what I had to say. He frequently cut me off in the middle of a sentence and even indicated at some points that I was exaggerating my symptoms. He was incredibly pompous and I should have seen someone else, but I was young, inexperienced and confused.
Also, looking back over this letter, I realize there are some red flags. For instance:
My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.
Pepto-Bismol is useless against my symptoms. It was not helping me to begin with. Had the doctor listened to me when I spoke to him, he would have known that and maybe given me some helpful advice.
In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice.
When I received this letter, I was already into my 15th or 16th week of persistent symptoms. If it is rare for my symptoms to persist beyond 12 weeks and it is essential for me to seek further medical advice in that instance, shouldn't he have dug a little deeper? Did he want me to wait another 12 weeks?
In a perfect world I would have gotten a second opinion and possibly found out it was Crohn's four years ago. In this imperfect world, I was out of money which meant I was out of options.
If I'd only known then what I know now...
The duodenal biopsies performed were completely normal; there was absolutely no evidence that you have or ever had giardiasis. There were no features of a malabsorptive illness such as gluten sensitive enteropathy. The biopsies were normal.
The biopsies of your colon did reveal some mild resolving inflammation consistent with acute self-limited colitis. This condition is secondary to a viral or bacterial colonic infection which is acquired by consuming contaminated food or water. It is extraordinarily common. Thirty percent of patients may develop persistent symptoms that can last as long as twelve weeks.
My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.
In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice. In rare instances, repeat colonoscopy with biopsy is necessary to be certain that occult inflammatory bowel disease, Crohn's Disease, had not presented itself in an unusual fashion.
My clinical impression is that you will become completely well over the next several weeks to months and should have no long-term difficulties. I know this is frustrating to you if your symptoms persist, but I can not change that.
A copy of this letter with this information has been forwarded to your primary care physician, Dr. _________, along with your colonoscopy, endoscopy and pathology reports.
Reading this letter again now, it seems perfectly reasonable. I now know that it often takes years for a Crohn's diagnosis. I know that Crohn's is not always detected through a colonoscopy and my misdiagnosis was the norm. However, at the time I was frustrated, sick, broke and unhappy with my experience.
The GI doctor I saw rarely listened to what I had to say. He frequently cut me off in the middle of a sentence and even indicated at some points that I was exaggerating my symptoms. He was incredibly pompous and I should have seen someone else, but I was young, inexperienced and confused.
Also, looking back over this letter, I realize there are some red flags. For instance:
My advice is for you to continue to use the Pepto-Bismol chewable tablets, two by mouth, three times daily, until your symptoms completely resolve.
Pepto-Bismol is useless against my symptoms. It was not helping me to begin with. Had the doctor listened to me when I spoke to him, he would have known that and maybe given me some helpful advice.
In the rare instance that your symptoms persist beyond twelve weeks, it would be absolutely essential that you contact me for further medical advice.
When I received this letter, I was already into my 15th or 16th week of persistent symptoms. If it is rare for my symptoms to persist beyond 12 weeks and it is essential for me to seek further medical advice in that instance, shouldn't he have dug a little deeper? Did he want me to wait another 12 weeks?
In a perfect world I would have gotten a second opinion and possibly found out it was Crohn's four years ago. In this imperfect world, I was out of money which meant I was out of options.
If I'd only known then what I know now...
Subscribe to:
Posts (Atom)
Posts
