My name is Andrea and I’m 28 from New York City. I’m a photographer/graphic designer/jewelry designer. I love being outside, either taking photos or working out!
The New York City Colitis Experience:
I was diagnosed with ulcerative colitis in September 2011.
I noticed while on vacation over Labor Day, that foods just weren’t agreeing with me. I thought it was just a fluke and pushed it off. When I returned to NYC, it didn’t go away. Then my birthday arrived and I was terribly sick – I was convinced I had the flu. I went to my primary and she agreed that I had the flu. After a week I felt like I got worse than better, so I went to the hospital. I explained my symptoms and the ER doctor thought I was just severely dehydrated with the flu. So he gave me Immodium, Pepto and fluids, then sent me on my way. Two days later I was supposed to have a follow up appointment with my primary doctor, but I called and told her I was too sick to come in, so she told me I have to go to the hospital again. I went back to the hospital and checked in. Needless to say, the ER was surprised to see I had returned, so he made sure I got in immediately.
I spent a week in the hospital. I was assigned a horrible GI doctor and an even worse internal medical doctor. By the end of the week, I was discharged. I was given a low dose of Asacol and 40Mg of Prednisone. My IM doctor told me to ignore the diet the dietitian had given me. He called it the wonder bread diet. He gave me stacks of papers on how I should be eating. Since I had no idea what I was up against, I decided to go with his plan – which was to become a vegetarian. He said I was only to have an egg or nuts for protein. For 3 weeks, I followed his plan, which almost killed me. I lost close to 30 pounds in 3 weeks. I was having a hard time setting up a follow up colonoscopy and I was horrified at the partial one they did in the hospital. The doctor was beyond rude, he bickered with his nurses and yelled at me thru the procedure since he didn’t think it was necessary to put me under.
I found a new GI doctor who did the follow up colonoscopy. He was shocked at how severe my case was. In the 6 weeks after leaving the hospital, my colon had not gone down in size, but my ulcers were healed. I wasn’t tolerating the steroid – the side effects were taking a huge toll on me. My doctor started weaning me off of it. At that time, he recommended that I start taking 6MP as a replacement for the steroid because of the severity of my case. He explained that this drug was a great one – basically no side effects, but it would lower my immune system. So again, I trusted him.
Currently I am off of the steroid. I continue to take Asacol and 6MP. However, my doctor was certainly wrong about 6MP not having side effects. My hair is severely falling out and my teeth are sensitive. I hope these are temporary because the hair loss is really upsetting me. Luckily I have thick, curly hair, but now it is very thin and coarse. I know losing my hair sounds silly, but its something that people have begun to notice.
I’m still getting used to the idea that I have UC. I’m still very frustrated at how all of my doctors have persuaded into taking their direction which hasn’t worked for me. What may be most frustrating is how hard it is to find a decent doctor in New York City!
I do not like being on medications. The Asacol doesn’t bother me, but I am open to suggestions on what to do about the 6MP. I have been looking into the SCD. I would prefer to control UC with diet and as little medication as possible.
written by Andrea
Submitted in the Colitis Venting Area
****** Another story about hair loss written by Carol might help you out: