Easter and Beginnings: Sharing my Story of Chronic Illness

I've been thinking about starting this for a while, and somehow this dreary Easter day seems to be the beginning. I've been asked more times than I can count about how I've handled all the things that life has thrown at me. And, one of the pieces that seems to baffle folks the most is how I manage to live with several chronic illnesses. Frankly, I only have my perspective about it and I've never known any different. Being healthy isn't something that's been in the cards for me. But I've learned a lot over the years, and it remains a constant in my life. So, I'm here to share it for others, maybe it will help someone else - and maybe help me through some bad days in the process.

So, lets just start with the diagnoses to get them out of the way: ulcerative colitis with indeterminate crohn's disease (first diagnosis approximately 1989, second in 2005 - more on that in a later blog), interstitial cystitis (diagnosis 1997), chronic costochondritis (diagnosis approx. 2005), and endometriosis (diagnosis approx. 1998). I think that's it, except for the newest thing affecting my lungs but I'm choosing denial on that one right now.

Today, let's start with a little education about the one that is my most constant friend: ulcerative colitis. If you have a weak stomach for frank talk about medical issues, you might want to stop reading here, for today anyway. For those who don't know what it is, a good website is here: http://www.ccfa.org/ Ulcerative colitis (UC) is a chronic disease of the colon, or large intestine. The disease is marked by inflammation and ulceration of the colon mucosa, or innermost lining. Tiny open sores, or ulcers, form on the surface of the lining, where they bleed and produce pus and mucus. There are no areas of normal intestine between the areas of diseased intestine.

Lovely, right? I know.

In UC there is a hyper response by the immune system - basically the body thinks food and other particles shouldn't be in the intestines so it attacks by sending white blood cells into the lining of the intestines, where they produce chronic inflammation. These cells then generate harmful products that ultimately lead to ulcerations and bowel injury. Ouch.

Symptoms often include bloody stool, crampy abdominal pain and severe urgency to have a bowel movement. Diarrhea, loss of appetite and subsequent weight loss are common, as is fatigue. In cases of severe bleeding, anemia may also occur. In addition, there may be nausea, fever, skin lesions, joint pain, eye inflammation, and liver disorders.

There is no cure, but there are a variety of treatments out there. I use Asacol, which has been pretty successful for me so far in the bigger picture of things. I try to avoid steroids even though they are recommended because you basically only have a few shots to use them before they don't work - then you're surgical. I like to keep my options open as long as possible.

As I alluded to at the beginning, today has been a bad UC day. I've had a lot of pain and severe fatigue. Nausea has been almost constant. So, I snuggled up on the couch with a fire going next to me, lots of water, and am just riding it out. That's all I can do at the moment. Oh, and I started this blog. So, that's progress. Tomorrow may or may not be better, but we'll continue this journey together.