Tuesday, May 29, 2018

Mom's Got Guts: My Mom explains why she is walking in Gutsy Walk 2018

As a parent, you have dreams for your kids. You dream that they will find their passion in life, that they will be successful, that they will have lasting happiness. You dream of sports teams, sleepovers and birthday parties. You dream that their life will lead them places you never thought possible. You don't dream of weekly medical appointments, of hearing the words "we're not sure what's going on" in relation to your kid's health, or of what it's like to wait in the Operating Room's Waiting Room. You certainly don't dream of your child's early death.

Next week will be the 18th time Jacob's gone through the surgical suite doors. 18. 18 times I've sat here in the time leading up to it, repeating to myself "they're going to find what they're going to find",fully aware that we can't control the results. 18 times I will have sat the night before wondering how the results will change the course of treatment, wondering if the intestinal polyps are changing, wondering if this will be the time that we hear the words "remission". 18 times I will have kissed my son's forehead as he's drifted off, and paced the floor of the waiting room, waiting for that electronic sign to change his status to "In Recovery".

This past year I think has been one of the most difficult for Jacob, even though we've had other serious crises in the past. Since the summer, Jacob has been unable to maintain his weight, even though he has grown a lot taller. He now looks like a walking skeleton. At times, he doesn't even have the energy to go do his favorite outdoor thing - Pokemon Go, I know he's really sick when that happens. His pain in his joints and headaches have been really bad, and his eyes continue to go into on/off inflammation flare. He continues to vomit daily after 3 years. He's also having more intense symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). And that's just some of the physical issues.

As with any disease, sooner or later you run out of treatment options and this is where we're at. We're dangling from the precipice with a frayed rope and using all our strength to hold on for the ride.

In Crohn's Disease treatment, the goal is always for the patient to achieve remission as defined by the absence of detectable changes in the lining of the gut. The longer a person with Crohn's Disease is in flare, the greater risk of permanent damage and of cellular mutations leading to the development of cancers, goes up. 6 years is a long time to go without reaching remission. And with no real significant additions to the line of Crohn's treatments, there doesn't seem to be much we can do to get to the point of remission, except hope for spontaneous remission, which would be rare for a kid with such a severe level of disease. All we can do is hope that there will be more options coming very soon.

With surgery happening June 1, I'm not sure if Jacob will be able to attend this year's Gutsy Walk. I have already told him that I will go and walk for him on June 3. I'll walk because awareness is everything. It's more than just a stomach-ache, food not agreeing with you, or having frequent diarrhea. It takes more than just eating the right thing, or taking the right supplement, for the most of us to achieve true remission. I'll walk because I've held Jacob's hand through painful procedures, wiping away his tears and no other parent should have to do that. I'll walk for all the hours I've spent preparing information for school accommodations, e-mailing doctors and reading research. I'll walk for the fear that we hold for our children's future and the fears that they hold deep inside. I'll walk because enough is enough, we need to cure this disease.

Friday, May 11, 2018

What I Would Teach to New Doctors

Dear New Doctor,

Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.

As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.

The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.

Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.

It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients. 

Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected. 

Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.

To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.

Thanks for reading!
Wishing you the best in your future,
Jacob