After having quite a rough night last night, I realized that I haven’t shared how my progress has been going since my last scope. It’s probably a good time to write this since my progress appointment with Dr. Shen is on Tuesday, 1/24.
Sidenote: Something told me to call the Cleveland Clinic one sentence into this post. I would have bet $500 that my appointment was on 2/24. Looks like I was about 4 weeks off. I booked this appointment 2 months ago – thats how far out Dr. Shen books, which also speaks to how incredible of a jpouch doctor he is. And how unorganized and forgetful I am.
Hey! I’m busy. Which is good. I will tell you that the element of this treatment plan that has made me feel the best is my workouts. I’m back to running up to 3 miles (sometimes more), which I haven’t done in a long time. I remember when I had my ostomy my goal was always to be as healthy as possible – assuring myself that if I was my recovery from my next surgery would be quicker which would mean less time in between surgeries. Less time in the hospital.
I was always right.
I think the longest I stayed in the hospital after a surgery was 3 days. That was after my first surgery and trying to learn how to live life with an ostomy. Dr. Strong would always come into my room like Batman – unexpected and swift. He would look at me with amazement and pride and tell me that I could go home the next day. When that time came after each surgery, I would jump out of my hospital bed and jump back on the treadmill as soon as I was allowed. After my second surgery I disobeyed (ME?! Disobeying?! NEVER) and started working out too hard too quickly, and earned myself a bowel obstruction and another 4 day stay at the Cleveland Clinic. Whoops.
But the point of that is my intentions were good. I wanted to be as healthy as possible. What happened to that mindset? How did I let that slide? I can think of a million excuses and reasons why, but at the end of the day, I am to blame for the nervousness that I am feeling to see Dr. Shen on Tuesday. No one put me in this place but me. Which has been tough to carry. I’ve learned that having forgiveness for yourself and your mistakes is crucial for moving on so that I can be the best version of myself for my family, my friends, my co-workers, and my boyfriend.
On a lighter note I feel incredible. Do I have my days? YES. and nights. I always will. It’s learning how to bounce back from them so that I have fewer. My eating and health habits have changed, but changing my personality is even harder. I’ve learned more about myself and my disease in these past 3 months than I have living with the condition for 5 years. Living with a jpouch is a consistent learning curve. They don’t lie when they tell you that everyone’s body is different. I was blessed with the curse of cuffitis, a high stress temperament, and anxiety at night that could keep me up for days at a time if I didn’t have help from Aleve PM.
I’ve learned that stress affects my body and my colitis more than anything. Sure, my diet has led to ischemia of the jpouch and some pretty intense pouchitis. But my stress and emotions cause bleeding. I know when I go to the bathroom and see blood, I should probably be slowing my roll and resting. When I make a bad decision food wise, I feel more nausea than anything, which I hate more than pain. Last night I had pain in my rectum that was radiating up my spine. The first thing I do when I feel pain now is reflect on everything I did that day. How can I make a busy day less stressful for myself next time? Yesterday, I had 2 major meetings with clients that I was nervous about, expanded a lot of energy yesterday getting to those meetings, running them, and putting my all into answering clients questions and reassuring them.
I love what I do, sometimes a little too much. But that makes me who I am. I’m passionate and hard-working. Changing that would be impossible, and I don’t want to change it. The difference now is that I understand the importance of stress and how intensely that does have an affect on the health of my jpouch. Balance is key. I’m still practicing that one.
I finished almost all of my Hyperbaric Oxygen treatments. What a great idea from Dr. Shen. After 3 weeks, I felt incredible. If you have a jpouch and are struggling with pain, bathroom trips, fatigue, anything – ask your doctor about HBO treatments. They are tough, no sugar coating. Going to the hospital for 3 hours every weekday and undressing, taking off makeup, brushing out hairspray and not having a phone or really being able to move is tough. But its another commitment and choice that I had to make to be healthy. Sure, laying down for 2 hours a day might sound easy to some, but it wasn’t. The pressure can give you a headache, it gets very boring (technology addiction) and its hard to move. Also, my eyesight is currently a disaster; which will improve. The aftermath and how incredible I feel now makes up for the emotional trauma those treatments caused me in the beginning.
I workout with Nikki once a week, I was with her twice a week for the first 2 months. She has taught me skills that not only help ease my stress, but has been an incredible friend, support system, and therapist through all of this. Our workouts are fun gossip sessions that result in an escape from the stresses of daily life.
I no longer dread running and cardio. I found an app called Aaptiv – which has coached me to be the best runner I have ever been. The app offers workouts ranging from easy to hard, from running to strength training. If you are having trouble getting through the same old boring cardio workout, I strongly suggest you give this app a try. http://www.aaptiv.com *not an ad – I truly love it.
My nutritionist taught me the importance of reading nutrition labels, how great lean protein makes me feel, how to use probiotics to defend my body, that cutting carbs instantly slims you, and has motivated me to want to make better choices.
I have to say that after all of this I’m proud of myself for picking myself up and figuring out how to fix this. I’m still learning, I’ll never be perfect. The support I’ve received from everyone I love has been incredible and so inspiring. Pfizer has opened my eyes to other jpouch patients who struggle and I have been able to help offer advice from my own tribulations – and I’m lucky that they share theirs with me.
Those times of great suffering have never been a reason for me to hide and feel self pity. You have to take the challenge that is put in front of you and be the strongest, most positive person you can be so that others who are not as strong can learn from you.
Life with IBD or any chronic illness wasn’t given to me or anyone else as a way to live life full of excuses. If you think about it, when you are at your weakest, you are really at your strongest.