IBD In Your Teens

Here is some basic information that I wish someone could have talked me through when I was first diagnosed with an Inflammatory Bowel Disease.

A short little history:
I was diagnosed with Ulcerative Colitis when I was 14 years old (in the middle of grade 9). No one that I knew had ever even HEARD of Crohn's or Colitis. I wound up having my large intestine removed right before grade 12, had an ileostomy bag for 7 months, then had the reconnection and J-Pouch done a month before graduation. A few months later I was diagnosed with Crohn's Disease.

When you are diagnosed with a chronic illness as a teenager, it is even more difficult to understand the idea that you may never again feel well. That the pain in your stomach may never leave you alone, and that you have already essentially married your doctors. Your physicians and specialists become as important to your daily living as any friend, family member, or even spouse. They quietly guide you through everything. The pain itself - that you may actually become accustomed to.

Here are some tips:

1. Figure out exactly how you want to go about communication. Do you want to be open and honest about the disease? Do you want to conceal your diagnosis? Are you the type of person who is concerned about appearance when it comes to canceling plans, racing to a washroom suddenly, missing class, or last-minute work schedule changes? Or can you just ride out every day and take it as it comes? Find the best way of communicating about your illness.

2. Cherish your good days. Cherish them. Your day may even start poorly and then you may feel better, abruptly, later in the day. You may feel guilty about taking advantage of your good moments, but I would highly suggest: do whatever you CAN do, while trying to be respectful of other people's time. If you are stuck vomiting in the washroom and decide to skip class to continue puking in your own washroom, but then feel well later and want to go for dinner - go for dinner. As long as you are prepared to be judged, are prepared for consequences, and understand that people may think you are faking - then do it. Do what you can do when you can do it. Try to regard everyone else around you, but don't deny yourself simply for appearance's sake.

3. This one is big: other people at your age will have trouble understanding what is going on. You will lose friends. It seems unfair, but it is the truth. They may not understand anything you are going through. They may not believe you are ill at all. They may believe that nothing you are going through is *actually serious*. The friends that do stick around? The supportive friends who are willing to buy you underwear if you have a fecal incident? Or who book a table near the washroom for a group night out? Those people are gems. They will make everything seem a little less painful - by telling jokes, by having your back, by being as empathetic as they can.

4. Contemplate your long-term goals and what this illness may mean. You will have to consider things most people may not have to consider until they reach age 40 or more. How is your insurance coverage: do you need to find employment with good benefits?
Start thinking about a retirement plan. Yes, seriously. If IBD becomes severe enough, you may have to eventually rely on a fixed income.
What do you want in your life? What goals can be reached no matter how severe your illness gets? What goals can you only achieve with decent health? 

5. The right human being will fall in love with you whether or not you are ill. That person will see you for exactly who you are - your humour, your laughter, your quirks, your tastes in music and movies and food. There are ways to conceal the most embarrassing parts of this disease until you are ready to let a significant other into your world of medicine.

6. SUPER IMPORTANT: Every single person's experience of IBD is entirely different. Some people have difficulty with specific foods, others have fewer symptoms if they eat those same foods. Exercise and adrenaline helps some, but it also hurts others. There is no one-size-fits-all remedy or treatment plan. It has to be tailored specific to you. Finding what works is a process of elimination; trial and error. You are, in essence, your very own guinea pig. Sorry. So when you find what works, don't listen to the hype or the judgement, and keep doing what you are doing with the close consultation of your specialists.

7. Try to remember that, although you are feeling absolutely horrendous and lost, you are not alone. You are not alone in struggle, in pain, in suffering. This also means that, even if you can't see it, other people around you are also suffering. Intense and torturous pain gives no one the right to treat others poorly. We all make mistakes and we all want help, but lashing out does no good for anyone.

8. Be wary of support groups. There are benefits and problems with every support group. Sometimes it offers great coping advice and the simple knowledge that you are not alone in this. Other times it can become a 'pain war' of 'who has it worse than whom'. Further to that, there is a surprising amount of criticism and comparison. Not to mention that it can be quite alarming if you are in the early stages of diagnosis. Sometimes, seeing the most severe cases is just more anxiety-inducing.

9. There are ways of reaching the most conventional goals in unconventional ways. It can be nearly impossible to get to class all the time, but that does not mean a diploma or degree is out of reach. It may take you longer, you may have to work 10x as hard at home, or even do your research or homework at the hospital. But it can be done - especially with open communication.

10. This is your life. Without stepping on others: find people, hobbies, and activities you love. Cling to the coping strategies you discover. Try to ignore the judgement from people who do not matter or who have no say in your future. Cherish your time and your true friends. Find foods that hurt less and a regimen that helps you get motivated each day, rather than settling into a void. Find doctors you trust and can openly communicate with. Trust your physicians who suggest food and bathroom logs - these will come in handy. Find people who 'get it', who 'get you', and who accept you for exactly who you are.

Also, here are some products you may want to invest in:

• Mini air fresheners to keep around
• A bathroom playlist (if you want to conceal loud bathroom breaks when lots of people can hear).
• Depends and diaper rash cream
• Portable camping toilet (an empty 4L milk bucket will do in a pinch)
• Doggy bags (for vomit or emergencies)
• Peppermint tea (helps with nausea)
• A Bidet for your toilet (helps prevent the need for the second set of items)
• Dry Shampoo
• Extra sets of underwear
• A physical pen-and-paper daytimer (because technology screws up sometimes and you may have lots of vital appointments)
• A notebook to keep logs - or a medical logging application for your phone. Manage My Pain Pro is a great one that is highly customizable.
• Xylimelts (for dry mouth caused by several medications)
• Ice packs or magic bag that can be heated or frozen.

If you have any other questions, need to vent, want to discuss anything in detail, I am always available.

Lightersideofmedicine@gmail.com