Next week marks an unusual anniversary for me … one that, until now, I’ve been pretty private about. It was ten years ago that I was diagnosed with the autoimmune disease ulcerative colitis (UC). For those not familiar with UC, trust me: it’s not pretty. In a nutshell, your immune system (for unknown reasons) attacks the lining of your colon, causing inflammation and sores (AKA ulcers) that can lead to some, hmmm, unpleasant side effects.
Dr. G. and I had just moved to Baltimore in the fall of 2002, and less than two months later I began exhibiting what I now recognize as the classic, hallmark symptoms of UC (see link). I won’t go into the icky details, but let’s just say it involved lots of bonding time with our bathroom. Eventually, it progressed to the point where I was pretty much petrified to leave the house, because I didn’t know when “the urge” would strike. Whenever I went anywhere (the mall, a walk, etc.), I always had to scope out where the bathroom was in advance so I would be prepared, since I didn’t really have a lot of advanced warning.
It was embarrassing. I remember going for a walk in our neighborhood and having to beg a local merchant to use his restroom (which makes me so happy that Massachusetts passed the Restroom Access Law). I remember Christmas shopping that year and having to drop all my items in the middle of Macy’s to hightail it to the ladies room. Twice. And there were a few times when, um, I wasn’t quick enough. Like I said, embarrassing.
On the bright side, I pigged out like never before that holiday season because I wasn’t really digesting my food, which meant I wasn’t gaining any weight. Sorry, just a little UC humor.
It took a battery of uncomfortable tests to finally get my diagnosis, which was both a blessing and a curse. It was a relief knowing that there was actually something real wrong with me that could possibly be fixed. But then I learned that there is no cure for UC, that it’s a chronic condition and I’d have to take medication for the rest of my life to keep my disease under control, or “in remission,” as they call it.
The horrible episodes I had been experiencing? In UC terms, those are called “flares.” And unfortunately, the best ways to calm a UC flare are oral steroids: namely prednisone (or the “evil horrible wretched drug of misery,” as I call it).
So now here I was: the holidays were over, I was feeling somewhat better, from a GI-perspective, but the steroids were wreaking havoc on my body. I puffed up and was so bloated that I was almost unrecognizable (seeing the few pictures I allowed to be taken during that time still make me wince). I experienced horrible mood swings and rages. I stopped getting my period.
I begged to discontinue the steroids, but because of the nature of the drug, you can’t just stop cold turkey. Eventually, after a few months, I was able to taper off without re-flaring. It took some tinkering, but my wonderful doctor and I eventually found a combination of medications that seemed to work to keep my UC at bay.
In that time, I’ve only had one flare, and that was about three years ago. I was able to take my meds during both my pregnancies and did extremely well. In fact, my doctors said it was better for the babies that I stay on my meds because if I went off and had a flare, I was at high risk for miscarriage. Scary. But thankfully, Buddy and Mimi are beautiful and healthy, and for that I am eternally grateful.
Believe me: I don’t like taking 12 pills a day. I don’t like having a higher risk for colon cancer, which also makes me “undesirable” from a life insurance perspective. I don’t like living with the constant fear that I’ve passed this disease on to my kids (there is a suspected genetic link), which makes me overanalyze their bathroom habits.
But I try to keep it all in perspective, because I also know I am one of the lucky ones. I’ve been in remission (for the most part) for a decade. I was able to get pregnant and have two healthy children. I have wonderful health insurance that covers the medications that keep me functional, because I don’t know how I could work and take care of two kids while suffering from the debilitating symptoms of a UC flare.
Like I said, I’ve generally been pretty private about my battle with UC because – let’s be honest – who wants to talk about colons and poop? But I wanted to share my experience to call attention to Crohn’s & Colitis Awareness Week.
Because, as it turns out, I am one of 1.4 million Americans living with UC and it’s more serious cousin, Crohn’s disease. These diseases affect, well, pretty much everyone: young, old, male, female, rich, poor, all races. It doesn’t discriminate.
It’s taken me ten years to realize that there’s nothing to be embarrassed or ashamed about when it comes to my disease. In fact, writing this post was surprisingly therapeutic for me; another testament to the power of words. I just hope my story is proof positive to other UC and Crohn’s sufferers that it is possible to live a happy, healthy life with this disease. But most importantly, I hope that by calling attention to this issue, and supporting the need for more research on these diseases, we might someday find a cure. So please do me a favor and check out the Crohn’s and Colitis Foundation of America.
Do you know anyone with ulcerative colitis or Crohn’s disease? Or what about IBD in general?
maryanne @ mama smiles says
That sounds very tough. We have a friend with Crohn’s. Very difficult disease, but definitely liveable with proper treatment.
Sherry Ann says
I’m always interested in reading others stories of having an IBD. I’ve had UC for 20 years and it took me a while to come to terms with having a chronic illness. So it’s nice to hear from others, to know I am not alone. I’m very glad you are able to control your UC successfully (for now and I hope forever in your case!) I haven’t been so lucky and it’s been a huge battle for to get to where I am today – which is remission!
Heidi says
Thank you. I have Crohn’s.
Jessica Dimmig says
Thank you so much for sharing. I have had UC for 3 1/2 years and have not been in remission until now. They have changed my medicines and they would work for so long then It was almost like my body was use to them and would get sick again. I am now starting to get a hold of my disease and It’s getting a lot better. I take apriso which helps and about 3 months ago I went to see a rhuematologist because with the UC it effects my joints. So now I am On a shot called Simponi and it has been amazing. No more joint pain and it’s putting my UC in remission. It has been a struggle but the past 3 months I feel like I am on top of the world. I have energy ,I don’t have to stay close to home, and feel like a normal person again. I am also not afraid to talk about this anymore. It’s a part of my life and I will fight this into remission.For a long time to I felt alone and with no support. Thanks for giving me hope.
Julie says
Thank you for sharing about your UC. It is wonderful to hear that you have mostly had remission for 10 years!! And were able to have children. Gives me hope for my kids – a son 21 who was diagnosed with UC at age 10 and a daughter now 13 who was diagnosed at age 8. Blessings to you!!
Nancy M says
Thank you for sharing your story–my daughter was diagnosed with UC 17 months ago at the age of 24. She has been hospitalized twice with flares, and is doing better with remicade, although she is having side effects from the medicine that is supposed to make her better.
One in 225 people has crohns or colitis, and there are newly diagnosed people EVERY DAY!!
Through research and medical advancements, most people can live productive lives with IBD, but not everyone. There are many people on disability beccause of this disease that is uncomfortable to talk about—but because of people like you, sharing your story, many more will become aware!! And that is SOOO important! Thank you!!
Doug Demidovich says
Thanks for sharing! In a sick way it is nice to hear there are others out there struggling the same as me. Honestly, it comforts me to know that I am not alone. I was diagnosed at 19 and now 39. Spent most of my time in remission but the bad times are bad times as you know. Had a resection done (2) years ago with very bad results. But have recovered since then. Again, thanks for sharing.
lindsay says
Thank you for sharing. I have had Crohns for 9 years.
Molly says
Thanks for sharing your story. I was diagnosed with Crohn’s 6 1/2 years ago and am getting ready for my 2nd resection (the first was only 2 years ago). I always appreciate hearing the stories of others because we’ve all been there. I’ve abandoned more than one shopping cart in my day! I wish you the best and hope your remission continues! Thanks again for sharing!
A B says
Thanks for posting your story. It’s nice to hear from other people who have gone through similar experiences. I’m 28 and just celebrated my 10 year “crohn’s-iversary” in August. It’s almost become like a birthday to me, a day where I lost a carefree future but gained a much stronger existence. I don’t even remember what it felt like before I had Crohn’s.
It’s funny how the disease can end up impacting your life. Most of my decisions about my career and schooling came down to where I could get health insurance and which had the best hospital programs. It even made my husband take an interest in me before we even started dating (my sister in law got diagnosed with it about the time we met and he knew little about the disease). When I was diagnosed with Crohn’s, I really thought my life was over. I had no idea that I’d be able to live a normal life and be happy with it. That being said, there have been some bad times and some bad flares, but that’s a different story.
The older I get and the longer I have this disease, the more comfortable I am talking about it. The more I talk about it, the more people I find have their own problems – RA, lupus, the odd other Crohn’s patient. It’s made me realize that we are not alone and we are not as isolated as we feel sometimes.
Again, thanks for sharing your story. Congratulations on your family and the life you’ve built. Best of luck in your future and I wish you a long, lasting remission.
joanne davis yarvis says
Thanks for bringing attention to our disease. We need more people to come out of the “bathroom,” if you will, and bring attention – we need to find a cure! I, too, am one of the lucky ones. I was diagnosed at 8 and after struggling for awhile with my illness, went 20 years without a flare. Last one was 3 years ago. UC is not pleasant, but coming up on my 29 year anniversary, it has certainly made me who I am & given me strength. All the best for continued good health.
H Denton says
Thanks for sharing. I have UC & it’s always comforting hearing others experiences with it.
Rose says
Thank you for spreading awareness. I am 15 with UC, and it is great to see someone telling the rest of the world what we struggle with.
Dollops of Diane says
Although I don’t have a personal connection to the illness, I think it’s wonderful that you shared. I can only imagine how difficult it would be to have a disease like this but people like you shedding a light on it will help others to see they don’t have anything to be embarrassed about. Kudos to you!
Julie says
A friend sent me the link to your blog. Thanks for coming out with your story! I was began with UC at 17 and it’s morphed into Crohn’s with time. It’s wonderful to hear other stories of people with IBD doing well. Congratulations on being in remission for so long! Best of luck to you and your kids!
Dot Zullo says
You are truly a very strong woman and an inspiration to your Auntie! Love you