Colitis is a Systemic Disease

Apparently, I am a medical anomaly. I have a case of ulcerative colitis, but of course, it can't be a normal case. My colitis affects other areas of my body: mainly my lower back joints. I also have chronic pain all over my body that may or may not have to do with colitis. Who knows? My doctors certainly don't know. From the beginning they were scratching their heads when I ended up in the emergency room with severe back and leg pain, symptoms that pointed to a herniated disc, but that made no sense because I had not been involved in any accidents or falls.

The back pain had been building for weeks and not responding to any anti-inflammatory meds and then I started to have an electric shock down my backside and leg that indicated sciatica. Then one day the pain got much worse and I couldn't lift my arms. My leg pain was so bad I wanted to chop my leg off. Not kidding. I had also been having pelvic pain on and off and flu-like symptoms, including a strange itchy rash on my back. Whatever kind of flare up I had it was really bad, bad enough to make me unable to walk or do anything for about six months. I couldn't feel most of my right leg—it either hurt like hell or it felt like my leg was asleep. When doctors finally got around to doing any blood tests whatever caused the flare was long gone except for a bladder infection. I was diagnosed with reactive arthritis or Reiter’s Syndrome even though I didn’t have some of the main symptoms for Reiter’s. It's obvious that there had to be something else present to cause such a flare—a virus maybe or colitis? This happened in 2000. I wasn't diagnosed with colitis until 2007, but I had been suffering from chronic pain, back pain (Sacroiliitis) and fatigue all those years. Doctors back then kept asking me if I had any diarrhea, but I hadn't. I did, however, complain of constipation.

I recently read something about colitis and how sometimes it presents as constipation. So have I had colitis all that time, but didn't have the 'normal' symptoms until much later? It's possible. My doctors now think there is a connection.

I also found out that colitis is a systemic disease and can affect areas outside the colon, including the mouth (ulcers), eye inflammations, Musculoskeletal complications like Seronegative arthritis which can affect one or two large joints or smaller joints like hands and feet, Ankylosing spondylitis—arthritis of the spine, Sacroiliitis—arthritis of the lower spine, Cutaneous (relating to the skin) inflammation of subcutaneous tissue involving lower extremities and Pyoderma Gangrenosum—painful skin lesion, Deep venous thrombosis and pulmonary embolism, Autoimmune hemolytic anemia, Clubbing—deformity of ends of fingers and Inflammation of the bile ducts.

http://health.learninginfo.org/ulcerative-colitis.htm

Anyone else have any weird medical stories to share? There's so much that doctors still don't understand about the body and disease. The human body is truly mysterious.

Cheers and good health!

Colitis Chick

My mad colon

Technorati Tags: ulcerative colitis,reactive arthritis,reiter's syndrome,systemic colitis,sacroiliitis,constipation,chronic diseases,inflammatory bowel disease,self help,health issues

Technorati Tags: systemic diseases

Diary of a Mad Colon

Okay, so I haven't posted anything on here since February of 2008. Part of it is just not wanting to broadcast my illness and part of it is because I just want to forgot about have ulcerative colitis. But I can't forget about the disease because it won't go away. I thought I would have my one flare and it would be fine, but that's not the case. Since my first flare in 2007, I have had another bad flare in 2009 and now I am having another flare. The last one was really bad. I wasn't responding to the Ascol, in fact, the medicine made me much worse. It was the most horrible experience. I was afraid to to eat and leave my house for about two months. Finally, I stopped taking the Asacol and told my doctor it was making me worse. He had originally wanted to treat my flare with a Rowasa enema, but I refused. Stupid me. If I would have listened to my doctor, my flare would have cleared up quicker. The enema works better for me because my colitis is only in the lower part of my colon--lucky me. Having it only in the lower part of the colon is better, but it still has it's downside. In my case I have systemic colitis--meaning the disease extends to other areas outside my colon. My ulcerative colitis has also caused reactive arthritis in me. I suffer from chronic pain all over my body, but the most severe pain is my lower back joints. It's a party having to deal with abdominal pain, fatigue and pain all over the body.

I don't even know what is considered a normal 'bowel movement' anymore. Nothing is normal for me now. Since my last flare up I have suffered some extremely painful bowel movements. Yeah, I know this is gross and I expect, unless you have the same disease, you won't read this blog. Anyway, I get constipation so bad that it feels like I am trying to pass a boulder. I spend anywhere from 1-3 hours in the bathroom waiting it out. It's horrible and frightening. To try to improve things I eat Activia for breakfast, take 1 oz concentrated aloe vera juice in the morning before I eat and I drink an Ensure shake up to twice a day with 3 grams of fiber, antioxidants to improve the immune system and omega 3's. I know that in order to have a healthy colon, you are supposed to eat at least 25 grams of fiber per day, but fiber seems to make things worse for me and I don't even eat that much food in one day. I'm thinking I might need to increase my aloe vera dose to two times a day. If anyone has any helpful advice, I would love to hear it. Someone just mentioned that flax seed has fiber so I might start taking a small dose and gradually increase it and see what happens. I eat wheat crackers, bread, rice and pasta with salmon or chicken and steamed veggies. My only real vice that I know is bad for me is chocolate. I have cut back but I can't stop eating it. Chocolate cravings for me are like a cigarette smoker trying to quit smoking.

I guess that's enough for today. My vow is to add content to this blog at least once a week so anyone out there in cyberspace coming across my posts will be subjected to more gross outs from my experiences with a mad colon.

Cheers and good health!
Colitis Chick