The Beginning of Chronic Illness: or, How I Ignored It

Since I last wrote I've been busy spending time with my friends. One thing having a chronic illness has taught me is the importance of time, of being with those I love and telling them every moment how much they mean to me. You never know when it might all end.

As promised in an earlier post, here's how it all began. It started when I was about 14 with stomach problems. Now, when I say "stomach" what I really mean is "gastrointestinal issues" ....you get the drift. It started in high school about the time my parents divorce was in full swing and I was admittedly pretty screwed up. The doctors all said it was nerves, or related to my period. I'd have terrible, painful bouts of diarrhea. Yuck. They decided to call it irritable bowel syndrome (IBS), although they never did any testing to see if it was anything else. The medical establishment often says "you're too young for it to be anything too serious." Yeah, right. By the time I was around 20 it was still bad, and I went through a series of testing for both lower and upper GI issues - sigmoidoscopy, barium enemas, colonoscopy....I lost track of everything they checked. They eventually decided it was ulcerative colitis. Unfortunately, I was apparently in a bad space and either didn't remember what they said or it didn't mean anything to me. So I did nothing about it.

So, as expected, I was still sick off and on - well, more on than off I'd say. I'd often chalk it up to stress, or hormone issues, or something I ate, or.....the list goes on. I eventually listened to a doctor I had that was trying to case manage all of my issues and started a calendar. I wrote down every day how I felt, what I took for it, what I ate, what I drank...everything. I did this for six months. When I looked at the information, I could clearly see patterns around certain kinds of food, certain times of the month, that seemed to make it worse. This was a HUGE step for me. It finally gave me some control over it, some idea of what I had and how I could manage it myself. I wish I had done it sooner, but better late than never. This was a big step in the right direction. Unfortunately, it would take several more years for a diagnosis. Because I had also been diagnosed with endometriosis several years prior after two laparoscopies, as well as interstitial cystitis after the birth of my son, it wasn't easy for the doctors to determine what was doing what to my body. It became a process of elimination.

The first thing to go was the uterus - actually, it was a full total abdominal hysterectomy (TAH)...that means the uterus, ovaries, cervix, and anything else fun that they find. They did it abdominally in order to clean me out as well as possible. Endometriosis can sit in a variety of places in the body, and in my case it was on several organs. They also found out when they got in there that my uterus has collapsed onto my colon. Apparently this is all genetic, but I didn't know it at the time. So, out it all went. I was 33.

I was good for about a year after the hysterectomy, then the stomach issues started again. This is when I began the calendar I mentioned earlier. Then there was more testing, and another colonscopy with multiple biopsies, resulting in the diagnosis (again) of ulcerative colitis with indeterminate crohn's disease. This is also genetic in my family - which I also didn't know until my uncle mentioned it to my mom right after my diagnosis. This finally led me to finding the correct treatment...well, after the first doctor put me on the wrong meds (dipentum, which is for upper colon) and another doctor got me on the right ones. It's been about five years now on the new meds (Asacol) and I actually feel like I have a life now. A big part of that remains managing the illness, how I feel, what I eat...all that stuff. I have to take the meds religiously - 9 pills a day. I thank the universe every day for my health insurance - the pills would be upwards of $1000 per month. I get them for a $5 co-pay.

Even when managing this illness, mostly what I think about is how grateful I am for every day I have. And, how especially grateful for those days when the pain isn't severe. As I look back on it, sometimes I'm pissed off at how long it took to get it under control, years wasted. The longer UC is untreated the greater likelihood of being surgical - that is, having the colon (or parts of it) removed. Maybe I just wasn't ready to know, or understand way back when. I do know that it's shaped my life, made me a better person because I don't take anything, not one second, for granted. In everything, there can be a positive - you just have to look for it.

The Day After: Taking On Chronic Illness

Well, really it's two days after because I just wasn't up to writing yesterday. That's one of the most maddening bits about being sick - all the things I have to set aside for a later time. I've learned to be okay with it because there is no other choice. It's taught me patience...profound patience. It's also taught me to really enjoy the moments when I feel well ('well' being a relative term). Of course, I also tend to pack everything in at once. I did a research paper years ago with a friend on the intersections of disability, race and sexual orientation. One of the things we learned from those we interviewed who had a chronic illness was a need to make up for lost time and well as a tendency to overcompensate in almost all areas. It wasn't a surprise, but instead showed me what I already knew. To hear others say the same thing was comforting; sometimes we just need to know we're not as alone as we feel with whatever illness we have. I didn't realize how many others had UC until I started being open to talking about it. It's amazing what you can learn, the support you can find as well as give.

One of the things I want to share today is the importance of really taking on a chronic illness. In the end, there isn't anyone who can help you as much as you can help yourself. Understand what you have going on for you, challenge the doctors, take the bull by the horns and do everything you can to not give in to the despair that may try to drag you down. I was told over 10 years ago that I'd never work again, that I could just lay around taking Vicodin until my time finally came. I believed it for about six months...then I said to myself "screw this, if I'm only around a little while longer I don't want it to be this way" and I got myself off the pain meds, started taking control over what was happening and really started living. No, it wasn't easy and I don't mean to imply that in any way. It did, however, lead me to much better health care and medication that is finally working. I know that is not the case for everyone by any stretch of the imagination. I guess what I'm just trying to say is - don't give in. Fight it. Live every day and every moment in the most present way possible and believe. It makes all the difference.

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.