This week on my blog has been dedicated to Crohn’s & Colitis Awareness and it has been my FAVORITE week of blogging ever! I am still linking up with Andrea, Erika, and Narci because sharing these interviews has literally been my favorite thing ever, I hope you stick around and read along 🙂
On Monday I shared an interview with my Mom who was diagnosed with Crohn’s over 20 years ago and has lived with it my entire life while raising us kids, maintaining a job, and smiling throughout life. Then on Wednesday I wanted to take a different look at how the disease can impact someone’s life indirectly, so I interviewed my Dad. Finally today I’m interviewing my Sister who was diagnosed only a couple years ago at the age of 21 after growing up with both our mom & her twin, our aunt, battling the chronic illness. (her responses will be italics below)
Hey Rae!
Hey girl!
How would you describe Crohn’s Disease?
This is a hard question because I don’t think you can. It is unfair to put it in a box, because we don’t all fit in that box together as Crohnies. Mine is going to be different from the next person. For me I am lucky to say that Crohn’s only controls a few parts of my life, some hours of some days, some people it controls their whole life. I cant really describe it in one word or sentence.
I really only remember the one time mom was majorly hospitalized for an extended time and had surgery to remove some of her bowels, I don’t recall being incredibly terrified but looking back that does scare me, I know she missed your 8th birthday but what do you remember thinking of that time?
I was clueless. Pissed my mom missed it but also kind of cool that none of my friends knew my aunt covered as my mom at that birthday party. I didn’t realize the bigger picture at the time.
We as a family were basically in denial about the possibility of you having Crohn’s, looking back it was pretty obvious, and it unfortunately lead to you suffering for quite some time before diagnosis. What were your thoughts & feelings leading up to and after being diagnosed?When did you realize and think you had it?
When I was on a cruise ship and looked in the toilet and saw blood. I was in A LOT of pain, I was sick. I hid it too I think because I lied a lot about being sick when I was young. I didn’t think people would believe me and so I didn’t believe it either. It is hard to understand what Crohn’s is. I was scared, I was frustrated. 20 year olds should be experiencing life, not lying to friends about going out because you want to but you can not. I just wanted to live. I was really sick at my 21st birthday, in pain, and skinny but I wouldn’t let it stop me. In denial, I knew I was gonna have Crohn’s but just wanted to get through some stuff, fight through it and figure out consequences later. I knew I had family that could support me, and I could consult with them though.
I remember thinking just how skinny & tiny, in a negative way, my sister looked here at the time.
What has your treatment been like?
Pretty good. Aggressive. Humira is the top treatment for Crohn’s. I suffer from anxiety so it is really hard for me to give myself my shots, I think it hurts more in my head. I’ve gotten off track a couple times. With Humira my immune system goes down for about a week. I take one shot every 2 weeks. If mom gets sick she can still take her pills. But I had bronchitis for 2 weeks and couldn’t take my shot so I had to start over and it takes a long time to get back on track. The shots give me REALLY bad joint pains, debilitating sometimes. I’m lucky for this treatment course. I am scared shitless of surgery, and even more terrified of an ostomy. I’m mostly scared because if I have to change my treatment I will only be decreasing since I’m at the top with Humira.
Having already known 2 people very close in our life with Crohn’s Disease do you feel better prepared for living with it? What have you learned from our Mom & Aunt?
I don’t think you can be prepared just because they are so different, all 3 of us are SO different. I learned from mom that I have Crohn’s but Crohn’s does not have me. I will live my life and not let in control me, I won’t give it more than I have. From Aunt Ronda I’ve learned that you can come out on the other side of this disease but even if you do it can still affect some parts of your life. I’m still learning but thankful I can go to them with anything.
What do you wish others knew about your illness?
Look at a picture of me one day not sick and look at a picture the next day while I am sick and they will look the exact same. I’ve gone out of the house sick, full face of makeup and people say I look great but in reality I feel awful. Don’t judge a book by its cover. I wish I didn’t have to feel so apologetic though. I still apologize to friends when I can’t go out, its like I’m constantly apologizing. I might make plans ahead of time but then have to cancel when it comes time, it may be just 4 hours prior but now I can’t make it because I feel sick.
Weight changes in 1st year of diagnosis. 2 middle photos are less than 2 months apart.
What advice would you give to others who are young and recently diagnosed with a chronic illness?
I definitely researched a lot but I consulted with mom too. Made sure I had support system, don’t be afraid to ask for help. You’re so scared but you need to reach out, even find support groups. Ask questions even if you think they are dumb. The more you understand the more leaning how others are affected, it all helps. Being educated on all aspects. Don’t read just what wiki says look past that too.
How has your life changed because of Crohn’s, both good and bad?
HA, is there an upside? In my first year I went to a Girls with Guts retreat and met SO many people outside of my family suffering, one of which has become a really close friend. That retreat was such a blessing. It can be controlling of your life, when you really real really wish it wasn’t. I say to myself I just want to be normal, I just want to be 23. I live a fairly normal life I just might sit on the toilet a little more.
You’d never know it but my Sister was feeling really sick this day, we were wine tasting and she kept having to sit down or head to the bathroom 🙁
Thanks for reading along this week and allowing me to bring more awareness to chronic illnesses like Crohn’s Disease! You can read the interview with my mom from Monday and my Dad from Wednesday too. I hope the posts this week helped shine a little light on the illnesses that are seemingly invisible, while the symptoms may be unseen the struggles are certainly real and those living with them need to be recognized. Let’s not be so quick to judge others as we are all fighting our own kinds of battles!
As a nurse, its so valuable for me to read personal accounts of how people feel when they get a prognosis like this! Its a great reminder for me to put myself in their shoes and remember that diseases like this one affect so many people’s everyday life (they’re not just terms and medical jargon). Thank you so much for sharing! I love, love your blog and will def continue to follow along!
Sam
http://www.adventuresgranted.com/
Thank you for stopping by Sam!!! I am so happy to have provided a little more insight and a reminder for you. I look forward to getting to know you better through this blogger world! 🙂