Back at CHOP

I started this blog back in 2007 as a way to chronicle our family, but especially Oli's journey. When he was born, I didn't really know what to expect in terms of his medical needs. Although his early years included a lot of doctor appointments, the last few years have been relatively low key. He decided about two years ago to stop walking with a walker and HKFOs (big braces), and now gets a new set of AFOs (smaller braces) about every other year, and a wheelchair every five years or so. We have his bowel routine down, and he can even do his enema on his own. He cathes at school, but doesn't take medication for social continence. He's not interested in that right now, and we have been respecting that.

Yesterday, we had to take Oli to CHOP urology for a video urodynamics study.  We were in the newish Buerger building, which is beautiful, but I miss the memories that I get to revisit in the old building. In the Wood Center/main building, where I used to take him for eveything, I get to walk the halls we walked when he was a baby, eat in the cafeteria where I have had countless meals during visits, and walk psat the NICU where Oli stayed when he was born. I also miss visiting the fruit truck outside the hospital, which is now gone because CHOP and Penn take up so much room on the block. A good thing for sure, but sometimes even small changes are a little sad.

For the VUD test, the doctor essentially fills his bladder, and then views it through xray imaging and measures spasms. This is the first time that they have felt that something was off. With very little urine in the bladder, he starts to spasm, and then leaks. Apparently, the spasms aren't good for the bladder, which is the first line of defense for the kidneys. So we protect the bladder to protect the kidneys. This means he has to go on medication to relax the spasms, which has the side effect of him leaking less. This is the road to social continence, or not wetting between cathes, but as I said, he just hasn't been that intersted. Much like I often "hold it" if I'm busy, Oli hates stopping what he is doing to cathe. But now, we will have to enforce it. I don't like the idea of him being dependent on another medication, but in the long run, I think regular cathing will be good for him. We are hitting an age where his differences are becoming more apparent, and I don't know how this will affect him. My hope is that getting a good routine down now will help him as he gets older and wants to do more and be out more. 

The Side Effects of Stress

So, it's been a while! But I'm officially coming at you from the other side of tenure. Tenure really is all it's cracked up to be, and I feel like I have found a good groove professionally. Although I remember being stressed out by the tenure process, it is almost palpable as I reread old posts. Although I made it through, there are definitely lingering effects that I am still dealing with over two years later.

 I had to hand in my tenure dossier in fall of 2015. The week I had to turn it in, I developed acute stomach problems, most notably, constipation. I know, possibly TMI, but the last few years have taught me that almost everyone has poop issues in one direction or the other, and that we need to talk about it more to help each other out! That started a spiral to bloating and then food intolerances. In summer of 2017, things got out of control and I started to see a holistic nutritionist. Her recommendations would help for a while, and then I would go right back to bloat and digestive issues. I then started seeing a gastroenterologist, and finally, an integrative physician. I've had a stool test, an MRI, a SIBO test, food intolerance testing, and an upper endoscopy. Luckily, nothing groundbreaking has shown up. But also, unfortunately, nothing difinitive has show up. I have gut disbiosis, slight stomach erosion (acid reflux?), problems detoxing estrogen, digesting fat, and gluten intolerance. I've been on countless supplements and medium-super restrictive diets, many of which work for a while, and then stop. I LOVE to eat, and these diets near kill me. Not really, obviously, but I struggle.

At the end of the day, I seem to have leaky gut and IBS, the latter of which is more of an umbrella term than anything else. I'm finding myelf intolerant to more and more foods. A low FODMAP diet helps, sometimes, but is hard to follow because it worsens the constipation. I'm beyond the point where my (likely) stress-induced issues are causing me a ton of stress.

Breathe. Observe the irony and move on.

My story isn't uncommon. A lot of people try for years and years to solve gut issues. What works for one person, unfortunately, does not work for another. So I keep trying. Some days are better than others.

You know it's bad when I'm unbuttoned and taking a picture in a public bathroom.

It is a lesson in patience and persistence.