Monday, April 8, 2013

Back on the bike!!!

 I am officially back on the bike! At least a bit. I’m feeling slightly less flat-out awful than I had been over the past weeks, and today went for a 4 hour endurance ride with some other semi-broken racer friends (one is recovering from being struck by a car, the other from tendonitis).
Here’s hoping that I’ll manage to avoid more surgery in the future, if things keep on looking up. The difficulty of all of this is that at this point cycling may actually BE my only option for non-surgical treatment. Because of a melanoma that showed up on my ear over the course of one week last May, and was described as “surprisingly pathological”, many of the immune suppressant agents that are the go-to’s of current treatment for severe Crohn’s disease are totally out of the question. And, I’ve been through the ringer with everything else and it hasn’t worked. I’ve also already got the bone density of a bird, which means that prednisone is a dangerous choice for more than a week long course once in a blue moon.
And so, my treatment plan is to try to stay positive, avoid undue stress (but I have so many tests to take at school!), and keep riding and enjoying life as much as possible.  Why does this work? We do know that endorphins and exercise (independent of endorphins) help the body regulate inflammatory processes and intestinal health. For one thing, your intestines have neurochemical receptors and an entire network of nerves of their own to communicate with. It’s not entirely clear by what mechanism exercise and joy itself help control the inflammatory processes of IBD, as opposed to generally supporting a healthy system, but there is some evidence to say that it does.
Sounds simple? No. Consider for a moment what that means in the face of a painful and often disparaging illness. Keeping a positive outlook and getting on the bike even when I feel exhausted or otherwise horrible may be one of the most difficult prescriptions there is. Comparatively, I tend to think that Remicaide infusions were a piece of cake.
However, there is something also amazing about deciding to put off studying to ride in the sunshine because it is a prescription.

quality climbing right in my own backyard. sunshine but no spring foliage yet.
Note: I really truly do not follow the “think positive and good things will happen to you” train of thought. Please do not confuse this post with that genre of [weak] logic. Bad things do happen even to those who are good people and try hard and have a positive outlook. But, because we know that neurotransmitters are partially influenced by emotion and stress, we can consciously control some of those internal processes by learning to alter the way we react to daily life. This general idea of the trainability of reactions is the premise of cognitive behavioral therapy (CBT). For some people, that might be helpful in managing stress related IBD flares. Personally, cycling is my stress management tool and joyful addiction, so I haven’t gone that route. But, because I really do believe in the science behind it, I have suggested CBT to a few of my weekly-stress-crisis having classmates who don’t have IBD but none the less do experience extreme GI upset every week before 

Monday, April 1, 2013

I ditched my doctor

If there is one thing that living with a chronic illness, and suffering some of the "worse case scenario" risks that are sometimes discussed as if they aren't real, I've learned that it is absolutely necessary to be your own advocate.

If something doesn't seem right, ask questions until it makes sense. Raise concerns. And, don't back down if you don't get a response that satisfies you. Nobody wants to be the victim of a case of medical malpractice, or suffer a poor outcome when it is preventable by communication alone.

After the last post, I had yet another potentially catastrophic miscommunication with my gastroenterologist. Dr. Proctor, who is supposedly an expert on IBD, demonstrated that she was unwilling or unable to have a conversation with a patient (me) about treatment plans and diagnostic tests. Even when concerns about incorrect or dangerous orders were raised, her response was, "This is the test I ordered, do it", and not even conveyed directly or with further explaination. So, sick of having non-conversations and receiving repeated orders by way of receptionists - as if I had not heard the first three times, I was done.

It was time for a change.

I filed a complaint with Yale Health detailing the mis/non-communication issues that I had been having, and the delays in needed care and resulting detriment to my health resulting. And, finally, the health center referred me to an outside gastroenterologist at the hospital (students are usually restricted to a small list of specialists who visit the health center only), who is "who students see when they have problems with Dr. Proctor". Apparently I'm not the first.

And, now, I wait for an appointment. Again.

I have a short prescription for prednisone, and am hoping that this mini-flare doesn't turn into something more serious in the interim.

Wish me luck! Since starting that prescription, my pain has decreased enough to get back on the bike a few days this past week. I'm a long way from being in racing shape, but at least I'm riding again.