UC Mom Chats with Caring for Crohn’s About Her Daughter’s Battle
Tara Blackburn is 27 years-old, a wife, and a mother of two adorable young girls, Alexis, 5, and Kyleigh, 2. On paper, it seems like her life is normal. However, two year ago, everything changed when her oldest was diagnosed with Ulcerative Colitis.
Since the diagnosis, Alexis has been through numerous medications, hospitalizations, and surgeries. Tara documents her journey caring for a young child with UC in her blog From a Mother’s Perspective.
While I have experience caring for a loved one with Crohn’s who is in his 20’s, I cannot imagine what it must be like to care for a young child with the disease. I was so excited when Tara agreed to answer a few questions for Caring for Crohn’s and tell us a little more about her life with Alexis and Ulcerative Colitis.
Caring for Crohn’s: How old is your daughter? When was she diagnosed with UC?
Tara Blackburn: Alexis is 5 (she will be 6 on 12/23!) She was diagnosed on August 4, 2010 with Ulcerative Colitis after going about 2 months undiagnosed.
C4C:How did you react when she was diagnosed?
TB:I was shocked. I had NEVER heard of UC before. I cried a lot the first month or so, it was hard to accept.
C4C: What has her journey been like so far?
TB: Alexis was put on sulfasalazine right away. It worked wonderfully up until the end of 2011. She started flaring so badly that nothing could get it under control. After many hospitalizations (rounds of IV steroids and blood transfusions), we decided to give Remicade a try. She seemed to get a little better after two infusions but she never stopped flaring.
In July of 2012, we had Stage 1 completed for the J-Pouch. The immediate results were nothing short of amazing! I had my little girl back. We completed Stage 2 in October and her final surgery will be performed on January 4, 2013.
C4C: Did you know much about the disease before she was diagnosed?
TB: Like I said, I had never even heard of it! Once I learned that it was similar to Crohn’s, I remembered hearing about a woman I worked with a few years back who told me about it. I remember feeling so badly for her. Other than that instance, I had never heard of it. It made me realize how many people are unaware of this awful disease! No one in my family or my group of friends had ever heard of the disease either.
C4C: How has her illness impacted your life? Your other daughter’s life?
TB: It’s been a long, tough road, that’s for sure. Alexis was actually diagnosed when my youngest daughter was only a few months old. I had to take time off from school to take care of her, and being away from Kyleigh during Alexis’ hospitalizations has always been hard. Of course, we’ve taken a huge hit financially, but we are hoping and praying everything can be “normal” for us once her final surgery is completed.
C4C: What has been the hardest part of caring for someone with IBD?
TB: Dealing with Alexis post-op has been so much easier than prior to her surgeries. Now we are working to make her feel better and heal her whereas before we always seemed to be fighting a never-ending battle that always ended up with pokes, hospital stays, or new medications. Watching her suffer and knowing there was absolutely nothing I could do for her was hard. We had to cancel so many outings because Alexis was sick or make sure there was a bathroom in sprinting distance. Currently our biggest fear is a bag leak, but I make sure we always have a change of clothes and extra supplies.
C4C: What advice would you give to someone caring for a loved one with IBD?
TB: Take each day with stride knowing that you are doing your best. All you can do is be there for them and love them and make sure they are following the doctor’s orders. If you are facing the surgical aspect of it all, know it isn’t the end of the world. I was a complete mess and scared to death beforehand but looking back, I am glad that we chose this route.
Thank you to Tara for taking the time to chat with me and share her daughter’s story! If you know of an IBD patient or caregiver who should be featured on the blog, please let me know.