UC Can Take My Colon, But I Won’t Quit – Heather’s Story

heathers-story

INTRODUCTION: This week, I’d like to introduce you to Colitis Mama, Heather Bernard. I absolutely love reading diagnosis stories. They help me to feel less alone and make me realize just how strong people with Inflammatory Bowel Disease are. Through it all, Heather managed to get married and have a beautiful son. The judges have awarded her as the 1st Place Winner in the #IBDninja Prize Pack Contest. Heather, I have your prize pack put together and ready to be mailed on Monday! Be sure to follow her on Instagram here. She can also be found on Facebook (check it out here). She tells me she is going to have a blog soon and I can’t wait to see it! So, now, let me introduce Heather…

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I never thought I’d be sick. My digestive system has never seemed right – diarrhea was a regular 246852_1996782271452_7802547_noccurrence for me, but it never lasted long, and then I’d be back to normal. On Christmas, almost 7 years ago, I could not get out of the bathroom. I again thought I had just eaten something ‘bad’, until I started bleeding. The pain was unbearable, but I still couldn’t grasp this could be something serious.

I went to the hospital and had a CT scan – they found nothing. I left with some antibiotics and pain medication, and was supposed to follow up with my primary care doctor the following week. But by then, I was fine…and I was 24, so wasn’t really at the top of my adulting game. I never followed up and went about my life for the next 9 months.

The following September, I had moved to a new home (and gotten engaged!) I started having diarrhea again, and ignored it. But the blood returned, then pain, and then non-stop nausea and vomiting. I lost 15 pounds in a week. I went to a different hospital, and they brought me in for a CT scan again. The results showed signs that I had IBD, but they couldn’t narrow down the type.  Within days, I had my first colonoscopy and a diagnosis – Ulcerative Colitis, or more specifically, pancolitis, affecting my entire colon. I remember looking at the images from the colonoscopy and thinking that could not possibly be inside of me. It was terrifying.

My first gastroenterologist was amazing – took the time to explain to me that this is a serious disease, and that I’d probably be on medications for the rest of my life. But I was still young, and stupid. I took my maintenance medications for a while, tapered off the prednisone about 6 months later, and then felt great – so I stopped my maintenance meds.

1970658_10202499397538447_263472909_n2 years and very minimal disease activity later, I was married, and shortly after, pregnant with my first (and now to be only) child. My pregnancy was awful. 24/7 morning sickness, kidney infections, and 9 hospitalizations in 9 months…but still, very little disease activity. I finally had enough of a flare to scare me when I was 6 months along that I went back on my maintenance medication. I thought I’d be fine. And I was, for a while. But shortly after my son was born, everything came back with a vengeance.

I couldn’t get out of bed. I couldn’t eat because I was so nauseous, and whatever I managed to get down wasn’t staying in for long anyway. Finally, after a few rounds of prednisone and no improvement, I ended up in the hospital for 5 days, and shortly after started my first biologic, Remicade. The next 3 years are a blur – I have tried and failed 2 biologics (Remicade and Humira) after less than a year on each, and have just completed my loading doses of Entyvio. I am, in the words of my doctor, ‘almost in clinical remission.’ But I still have symptoms, some extra-intestinal, and I wonder if I’ll ever feel ‘normal’ again. I’m now being treated for IBS as well since my symptoms never seem to disappear even when my inflammation is under control.

There have been times in the past that I have ignored my disease – I can’t any longer. There have also been times I didn’t think I could continue on. Despite all of this, I have so much to be grateful for – a husband who has stuck by me through the worst, a healthy, hilarious 3 year old son that guarantees I have to get out of bed, a career that provides for my family (and allows me to work from home!), and I haven’t given up yet. Will I end up having surgery eventually? Highly likely. This disease can take my colon, but I still won’t quit.