I am one of those people who took accutane for my cystic acne when I was 17. It worked wonders for the acne, but 3 years later when I was 20, I developed ulcerative colitis(UC). I don’t know if it caused it or not and likely never will. Another interesting thing regarding the onset of my colitis is antibiotic use. 7 or 8 months before I started developing symptoms that would later be diagnosed as UC, I had a very bad staph infection–on my face. I was injected with antibiotics and took them orally. I don’t know if it caused my UC but my poops were never the same after that assault on my system!
My Ulcerative Colitis Story:
So have had UC for 5 years now. Right now I am on tons of prednisone. Thanks to the extra energy afforded by the steroids, I was able to stay up into the wee hours of the morning watching Adam’s awesome videos. I don’t know why I’d never thought to search ‘ulcerative colitis’ on youtube before, but I’m really glad I did.
I started having more and more mucus in my stools. I didn’t think much of it, it just an observation. As soon as I saw a little blood I called my family doctor. He put his finger in my butt and referred me to a GI doc for a colonoscopy. Soon came the excruciating pain, frequent diarrhea, and even more blood. I thought I was going to die waiting to find out what was wrong with me. I kept calling the GI doc and they moved up my appointment. I’m definitely a worry wart. The colonoscopy showed ulcerative proctitis (just the rectum as affected at that time). I was put on rowasa enemas and asacol. That worked great for about 3 months. Next was cortenemas.
I didn’t like the original doctor I’d been referred to so I switched after seeing him for a few years. If anyone is reading this who doesn’t like their doctor, please look for a new one! My old doctor would take forever to return my calls. Anytime I had a little flare he wanted to do a sigmoidoscopy (with me a wake, it got really old). When I was stable I switched to another doctor recommended to me in another UC community on livejournal. I had an appointment with him when I wasn’t flaring just to meet him and get a treatment plan if I should flare. I liked him already. Then he told me he wanted to do blood work. He was appalled my other doctor had never done any blood work. I then fell in love with him (in an appropriate patient/doctor relationship way!). He seemed to proactive about my health. The blood work revealed I was a little anemic and his wonderful nurse taught me how to give myself B12 shots. I forgot to mention I was vegetarian at this time. The B12 shots gave me a lot of energy back.
So over 5 years I have so many UC stories to share, they wouldn’t all fit in here. I’ve been through tons of embarrassing things, things that would have destroyed me before I had UC, and am learning to move on. I went from never pooing in public restrooms, pooing in my own pants publicly, was hospitalized once, to proudly leaving my enemas out in the open for all to see during airport scans (you can have liquids on the plane as long as it’s medicine). I was afraid the airport security was going to take me into a room and use one to prove it was medicine, but it turns out no one messes with you when you when you are waving around something that has a ‘for rectal use only’ sticker.
I’ve never really had a good, long remission. 3 months at most usually. I’ve lost track of how many flares I’ve had. I’m tired of doctors telling me I will probably end up having to have surgery. Adam’s humor and delicious looking meals in his videos have inspired me to try the SCD. This afternoon I made a little smoothie and tonight I’m going to have some chicken soup. Thanks, Adam!
Past and Current Ulcerative Colitis Medication History:
I’ve been on lots of meds. I am still on asacol because if I try to stop or switch to something similar, the flares get worse. I’ve tried 6mp. I’ve tried Some Green Stuff that is illegal in the great state of Missouri where I live(works great for the pain but the idea of getting caught freaks me out too much). The most relief I had was when I started probiotics a year ago and stopped taking 6mp, and started exercising, a lot. I feel like 6mp makes my flares worse. My doctor says the next step is remicade and I’m not ready to go there.
As I mentioned, today I am on prednisone. For the last year for a flare I was doing cortenemas for a week or two and that cleared it up. I fell off my probiotics and exercise wagon and I restarted 6mp last month and I am starting to think having a suppressed immune system allows the flares to gain more power. But I’m not a doctor or a scientist. I wonder if anyone has any similar experiences with 6mp