A Life and Patient Journey – Q&A with Life Coach, Julie Singer (Part 2)
Recently our cofounder, Kirk Robinson, caught up with Life Coach and Inner Good customer, Julie Singer. We wanted to hear more about her life story, including her battle with Crohn’s disease, her journey as a patient, adjusting to life with an ostomy (ileostomy), and how she is helping others with autoimmune diseases live life to the fullest [Be sure to read Part One].
In this segment, we talk to Julie about what it was like being diagnosed with Crohn’s as a teen. Being a teenager is tough enough on its own, considering common issues such as biological development, drug and alcohol experimentation, teen angst, and simply fitting in with the crowd. Julie shares how she got through it all and what advice she has for parents with teens who have Crohn’s.
Julie Singer’s Journey with Crohn’s Disease (The Teen Years) | Part Two
Kirk: As a product of the 70’s, you and I both grew up in a different world in terms of diet and nutrition, approach to health and wellness. It’s just a miracle that we’re still here. Chemicals were a completely legit form of food. McDonald’s was perfectly fine.
Julie: (laughs) Oh totally! That signature orange drink that I had all the time when we would go to McDonald’s, I think my parents chose it because it was “healthier” than pop?! I remember we also used to have powdered milk for a while and it was so disgusting – horrible stuff. But I guess you do what you gotta do.
Kirk: Okay, we will come back to the topic of diet in a moment. Let’s talk Crohn’s. So you were diagnosed at 14. Did you actually have surgery when you were 14?
Julie: No. I never actually had surgery until I had my ileostomy in 2012, so I was 35.
Kirk: So you’re struggling with Crohn’s for all those years being a teenager, and going through puberty is like a chronic condition on its own. Looking back, how did you manage this time in your life when the odds feel stacked against you as a teenager already?
Julie: (laughs) Looking back I actually was very delayed. I think that is what finally tipped everyone off that maybe this wasn’t just a food-sensitivity issue. I was not developing like other normal girls cause I wasn’t getting the nutrients absorbed through my intestines! When I was 14 I was able to get on some medication. I took prednisone every other day and sulfasalazine and started to see some improvements.
I started drinking at age 15 with friends, which was not the right way of dealing with a lot of my emotional and physical pain. But there were times when I would drink alcohol, where I felt normal for a few hours, … well not normal but I felt like I could kinda forget about things or the pain would definitely subside. It wasn’t the most healthy way of dealing with it through high school, that’s for sure.
Kirk: You were kinda like “ah screw it!”
Julie: Yeah. I’d drink with friends like a normal teenager, but I probably did it in more excess than others cuz I felt like I just wanted to kinda forget what was actually happening in my reality. I remember when I was first diagnosed with Crohn’s my mom’s thought was “… ah you need to talk to a counsellor or psychologist or something.” I remember sitting on a couch with this guy who was a psychologist who didn’t have Crohn’s and couldn’t relate. It felt awkward and weird. I believe I went once or twice thinking this is stupid, what am I doing here? This guy doesn’t get it and why are we paying him, so he can listen to me talk about how shitty it is to have a bowel condition?
Kirk: Looking back, what would you tell teens that are in your situation … “Hey maybe lay off the bottle a bit because that may have hurt me.”
Julie: Yep! Definitely (laughs). I think I probably I didn’t deal with the emotional piece that needed to be dealt with. It was just a complete coping mechanism. It wasn’t just the Crohn’s, it was feeling like I didn’t fit in. I was 14 but looked about 11 years old. I was also a year younger than everyone else since I started school when I was 4 so I always trying to fit in.
Kirk: Like most teenagers, I bet you were going through all these different struggles and rebellion.
Julie: There was a lot of anger inside and a lot of it directed at my mom. I don’t know if it was me projecting a lot of my stuff onto her, but she was very good at triggering me, offering her input on how I should be dealing with the Crohn’s. Hearing her talk to other people about it really upset me as a teen, … I felt like this is my thing – I should decide who I wanna tell. Looking back I have compassion for my mom and how hard it must have been having your daughter go through an illness experience like I did. It is always hard to see someone you love in pain, especially your child.
Kirk: Knowing what you know now, what advice would you pass on to parents with teens battling Crohn’s?
Julie: I would encourage them to look at healthy ways to support their children with compassion but without becoming emotionally entangled in the process. Having a mentor, someone who has been through it, gets it and understands, and can listen without judgement. Someone who can ask them the right questions to help them open up and relate to some of those underlying emotions. Anyone who is going through a chronic illness will have stuff to process, and I think it is important that anyone with IBD be offered the freedom to express how they are feeling, rather than turning to unhealthy alternatives that numb out the pain, or just to deny it completely.
Taking charge of your diet can be a really empowering first step. Often with Crohn’s everything feels beyond your control. Your body and bowels have a mind of their own and it can be quite frustrating to feel at the mercy of what is happening. I believe it is especially important to empower younger people to regain as much control as they can, where they can, as they’re learn to deal with their new reality living with Crohn’s or colitis. No teenagers want to be told what to do, so empower them to make their own decisions that support their health, ones that they come up with themselves and that they feel good about!
Kirk: Wasn’t your doctor promoting diet as a way of keeping Crohn’s in check?
Julie: No, my doctor’s approach was – “oh, there’s no evidence diet has any impact on Crohn’s!” I guess I can understand from his perspective coming from the Western medical community that there is “no evidence”, it is the same approach many doctors often take around medical cannabis. If it hasn’t been proven in a large double-blind, placebo-controlled trial then there is no real benefit! Many physicians want to see the data, studies and research before they’re gonna stand behind it and make recommendations. Unfortunately the diet discussion with my doctor often became disempowering for me. I had this attitude of, “well, it doesn’t matter what I do. It’s just beyond my control anyway, I need to pop these pills and hope for the best.” It would have been great to have someone educate me on why gluten and dairy can lead to more inflammation in your intestines. I have learned over time that many physicians are often very focused (and good) at treating illness with medication but as soon as you ask them about things that could benefit your condition overall they have little, to no input.
Kirk: So you’d recommend seeking the advice of maybe a formal nutritionist or dietician or naturopath?
Julie: Yes but the ones I talked to never were really invested or willing to dig deeper. The dieticians who worked in the hospital would follow the Canada Food Guide. The same food guide that encourages the consumption of dairy products and grains (including gluten). Because I never tested positive for a celiac disease I shouldn’t be limiting my diet (gluten-consumption) in their opinion. In an effort to help me gain weight, the line I always got from the dieticians was “here, take some Ensure”, but Ensure is just full of sugar. As much as I hated to admit it, I knew that sugar really upset my intestines and was probably one of the worst things for me! I feel like the nutritional advice I was given from the “experts” was not very helpful at all. However that was the 90’s and I am sure things have evolved and changed in the hospital…well I hope they have. Looking back, my advice for parents on the issue of diet and nutrition is to seek a few opinions on the matter. Empowering your teen to listen to his/her body, take control of their diet and encouraging them to make healthy choices can have a long term positive impact, in more ways than one!
That concludes part 2 of our conversation with Julie. Click here to learn more about her Coaching practice, Inside Wellness. You can watch Julie’s video covering how to dress for various occasions with an ostomy by clicking here. If you are interested in sharing your journey with others, send Kirk a message on our contact us page.