Saturday, January 13, 2018

Angry Intestines

Coming into the knew year I wasn't feeling the best and so I knew it would start out with quickly figuring out how to get my intestinal health on the right track. I just didn't know it'd come so fast.

I don't write about my personal health issues very much on my blog. Largely because I have been very fortunate to not have any symptoms, and some because when things get bad I use Facebook and CaringBridge to share with friends and family to avoid having to repeat myself time and time again.

When I was 11 years old, in 2001, I was diagnosed with a form of inflammatory bowel disease called Crohn's Disease. After much debate and slight uncertainty my diagnosis was changed from Crohn's to Ulcerative Colitis (UC) limited to my lower colon. As I said, I've been very fortunate with how my health has played out (although when I'm sick I don't feel fortunate!). I've only had 3 *major* flare-ups in my 17 years of living with this disease.

Side note: I CANNOT believe I have had this for 17 years!

The last flare I had was in 2013 and it was very severe. I scared myself with how ill I got, how much weight I lost, and how quickly things progressed. I participated in a clinical trial and when that failed and I pulled out of it early it was recommended that I consult with a surgeon to remove my colon. Obviously this is not something I EVER want to have to face and it was terrifying for me. Luckily I consulted and got a second opinion from another specialist who was willing to try a couple of minor treatments to see if it helped me get over the hump to avoid surgery. I'm happy to say it worked and for the last 4 years overall I have been pretty healthy.

I tend to get "seasonal" flareups when the seasons change from fall to winter; many of us do. I feel rough for a month or two and my symptoms develop and increase, but then once winter gets into full force the symptoms die down and I feel myself again. However this time things aren't going as expected. I started feeling rough again late October and thought it'd all get better early to mid December. But my symptoms are just increasing and this last week I've felt exceptionally rough.

After a really rough day, I made an appointment with our local general surgeon to get a colonoscopy done as soon as possible. See, I'm supposed to be getting scopes done every 1 to 2 years to make sure my intestinal tissue is healthy and I am not developing polyps or any other nasty thing. Due to insurance, money, and time I haven't been scoped since 2013 sooo I am long overdue.

My appointment with him went very well and he agreed that the best step to take is to look and see what is going on in my colon. We suspect increased inflammation and a consult with my GI specialist to get back on a treatment plan with some new medications.

But as always, I always get reminded of the reality of living with a chronic disease like UC. After 8-10 years of having IBD the risk of colon cancer increases significantly. With patients, like me, who specifically have ulcerative colitis, that risk is even greater because the disease activity is limited to the colon, whereas Crohn's disease patients can have inflammation anywhere in the GI tract. Each year after year 10, the risk, as you might assume, continues to increase. I am nearly 20 years out and I was gently reminded that I am in a very high risk category to develop colon cancer.

No, this doesn't mean that I WILL get cancer (and I have to keep reminding myself this), and my doctor told me that only once has he diagnosed a patient under the age of 35 with colon cancer (who also has IBD <15 years), but that the yearly screens are critical to me decreasing my risk and catching a dysplasia early to prevent it progressing into cancer. With that being said, I'd lie if I said I wasn't concerned or nervous to what he'll find in a couple of weeks. I haven't been scoped in several years, so it's a little concerning. I have had a history of a lot pseudo-polyps suggesting that I've had a significant amount of inflammation and healing. Thankfully I don't think I've ever actually had a polyp, so I'm trying to stay optimistic that he won't find any this time, either.

I scheduled my scope for the 23rd and will follow up with my GI in Colorado following it. He said that he will be taking extensive biopsies throughout my colon to check for any abnormalities as a preventative measure. This assures me he has my best interests in mind and I'm so glad he is real with me and lays out all my risks and options going forth.

While I'm a little nervous for all of this, as I always am, I'm also ready to get the ball rolling and finally get back on track with regular screenings and maintenance of my disease. This was a goal of mine in 2018, so the earlier I can get it done, the more I can get accomplished this year! Update to follow when I finally learn what's going on inside of these angry intestines :)

No comments:

Post a Comment