Crohn's It Was and Crohn's It Is and Crohn's It Ever Shall Be

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.

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.

Steroids

Entocort

Entocort aka Budesonide is a steroid that is released in the intestine. The idea is to keep it out of the blood stream and limit side effects.

I didn't have any trouble with side effects on Entocort but it didn't help either. I tried it for a month with no results.

Plan C.

5-ASA

Pentasa

My Crohn's treatment began with Pentasa also known as 5-aminosalicylic acid or 5-ASA. Pentasa is an anti-inflammatory that acts only in the digestive track which means there should be fewer side effects.

I had some trouble with Pentasa. I started off with six pills per day and the nausea was awful. I cut back to three pills then added one pill a week until I got back up to six. The nausea got better but my symptoms did not improve after a couple of months.

Time for plan B.

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!

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.

Uncover Ostomy

This is fantastic.
http://uncoverostomy.com/