What We Wish Our Parents Knew

Posted on 2 November 2012 by samisophia

At ImproveCareNow’s Fall Learning Session, the Patient Scholars and parents had a special breakout session together. At the parents’ request, Jennie and I have co-authored a list of What We Wish Our Parents Knew navigating IBD through our teenage years:

1) Take a deep breath: Living with IBD as a teenager isn’t easy, but it doesn’t need to be figured out all in one day. There are going to be days that go according to plan, and those that really don’t – sometimes just getting through the day is the goal.

2) I’m moody; get used to it: Regardless of my IBD, I’m still a teenager, and I’m going to be moody sometimes (or okay, a lot of the time). It doesn’t mean I don’t love you, it doesn’t mean I don’t need you; it just means I’m growing up.

3) Let me cool off: Between the stresses of growing up and dealing with my disease, there will be times I just want to be by myself. Let me take some time to calm myself down. I will come to you when I want to talk.

4) I’ll know when I’m ready: The second best decision I made after my diagnosis was to join a teenage support community. The first best decision was to wait until I was ready to make the most of it.

5) Forgetting is not failing: If I forget my pills a few times or make some choices I’ll regret on the toilet tomorrow, don’t assume you need to charge in and take control. I know it’s hard for you to watch, but you’ll make more of a difference if you ask me how you can help me do better instead.

6) One of these kids is not like the others: Especially when I’m sick, try to go easy on and make time for my brothers and sisters, even if it means taking time away from me. Remember that we all don’t know how it feels to be each other.

7) Caring isn’t always sharing: I know you don’t like when I don’t tell you about the blood or mucus or pain until it’s been happening for a few days – but until there’s something we can do about it, I’ve always felt it’s better for just one of us to be scared. Trust me to know when I need to come to you and when I don’t.

8) It’s my body, and I’ll decide if I want to: I am going to be moving to adult care soon, and it’s important that I’m prepared to be my own medical advocate. Help involve me in my care, encourage me to call my nurse and refill prescriptions, listen carefully to my concerns and ideas, and help me make decisions with you and my medical team.

9) There’s nothing like a good IBDer: My IBD friends will just ‘get’ it, and it’s really important to have that social support – it helps me feel normal and social.

10) Hello, my name is IBD: If I ask you not to mention my disease in a public situation, it doesn’t mean I’m embarrassed. It may just mean I’d like to introduce myself before I introduce my disease.

11) At least it’s not ….. : Some of my friends with IBD or other chronic illnesses will be healthier or sicker than myself, but please don’t make comparisons. I know my worst may be someone else’s best, but that does not mean I don’t have a right to mourn my losses.

12) What hurts the most: When you say you’d take my colon from me and give me your healthy one if you could, I know it’s because you love me and hurt seeing me in pain, but I could never dump this on you. Some days, I wish you could see my perspective, but the thought of you feeling my pain makes me hurt more than anything.

13) Home is where your guts are: I don’t want to be defined by my disease, and part of that is going to school/work where I want. It’s possible to leave home and travel for school. With the right accommodations, I can do anything. I know my body and myself, and I can decide what I can handle.

14) Forever isn’t tomorrow: Sometimes, it’s okay to live in the moment, and make decisions for the next week or next month or next semester, without worrying about where we’ll end up. This is a forever disease, but we don’t have to make decisions for forever today.

15) A bumpier ride makes for a better story: Life is not going to be easy as pie living with IBD. Every year will be something different, but if we hold on and stick together, we’ll emerge one way or another.

This is it

Posted on 1 November 2012 by ImproveCareNow

[Editor's Note: The following post was written for LOOP by a member of the ImproveCareNow Parent Working Group who is also living with Crohn's disease.]

After years of planning for transition, this is it. On Monday, my son will borrow a car from a classmate, drive himself 35 miles from his university campus to a Dallas hospital, use valet parking for the first time, check in at an infusion center, and get his Remicade infusion, alone, for the first time. He’ll be far from his Ohio home and far from me. This will be his 53^rd infusion; I’ve been there for nearly every one.

As usual, he has led me along in this transition. At age 11, when he’d only been diagnosed with Crohn’s disease for a few days, he came to me and said, “Mommy, if I have to have an ostomy that’s OK, because you have one and you can do whatever you want”. I hadn’t even brought up the possibility of surgery but he was already way ahead of me.

I’ve tried to do what the transition guides tell us, with mixed results. (Does anyone not get mixed results with teens?) But now that his – our – transitional period is ending, I can see that he was preparing himself all along. He is ready to continue the daily battle on his own, with me in a supporting – rather than guiding – role.

So now I’m left to consider what my new post-transition role should be. For the past seven years, I’ve advocated for pediatric IBD patients through our local center and the ImproveCareNow network. There’s still much to do and I’m still motivated to continue, but I’m no longer a parent of a pediatric IBD patient. How much longer will I be able to relate to other parents and feel that they can relate to me? I guess you could say that I’m in transition now. There are no pediatric-to-adult transition programs for the parents, so I suppose I will have to find my own way.

Adulthood

Posted on 16 August 2012 by jendavid91

On the day before my 21st birthday, my Mom informed me that I was now an adult and that I didn’t have to listen to my parents anymore (folks, you heard it here first!). I laughed at this, and inside I thought, can I really be turning 21? How is that even humanly possible?

As part of my summer research job, I was headed out of town on my birthday for a project. Everyone at work was apologetic about the untimely trip, my parents disappointed that they wouldn’t get to spend the day with me. I was unperturbed – completely happy and willing to travel for work on my birthday. And here is why:

I spent my 16th, 17th, and 19th birthdays in the hospital. I couldn’t eat the birthday cake, and all I wanted to do was stay wrapped in my covers and continue to watch McDreamy save lives on Grey’s Anatomy. My 19th birthday was particularly memorable. I was just under two weeks away from my ileostomy surgery, which I was so excited for I probably qualified for some diagnosable mental condition. The GI finally convinced me to try some pain medication, after I had refused it for some time (note: not because I was stoic, because I’d never had it for IBD before and thought it would be as effective as Tylenol for a massive head injury). And once I had the pain medication, life was awesome (pain control, where had you been all my life???). I was still in pain, but all of a sudden I didn’t care so much and my eyes just went a little blurry and I was instantly more comfortable. Everyone I had possibly ever known (and maybe even some people I didn’t know) came to say happy birthday and give gifts. I promise (sarcasm implied) if you want gifts for 6 months, have your birthday in the hospital and then get an organ removed. An appendix will do, no need to go for the colon. So if you can imagine me, sitting on my bed, happy as a clam and slightly (or okay, mostly) out of it, with gifts piled around me and people everywhere – then in walk people with guitars and they start singing happy birthday. I asked my parents about this, I swear I didn’t hallucinate it. As crazy and silly as that memory seems in hindsight, the very idea that two years later I could be pain-free and working on my birthday flabbergasts me. I was too sick to work, too sick to travel, too sick to enjoy my birthday.

So cue my 21st birthday: I was serenaded with happy birthday at work (being sung to by the chief cardiac surgeon was hilarious), piled in a car with my co-workers, had dinner, went for a run, watched the Olympics, and went to bed. A normal day. An ordinary day. But those of us with IBD know that normal is extraordinary, and days like that don’t come as easily or frequently as we’d like. As I was running, I took this photo and couldn’t help but smile at where I’ve been, and more importantly, where I’m going.

I know my future with IBD still exists, there are still uphill battles to lose and conquer, scars to earn and strength to be lent to me by those I love. But today, I am 21 and things are bright and shiny.