Summer update
My blog entries seem to be more spread out as I continue to get healthier. Some days my health is not the first thing I think about when I wake up or the last thing I think about before I go to sleep. Hallelujah! This summer brought lots of new experiences and one of the biggest ones was my first big trip with my jpouch. I went to Seattle and Vancouver for 10 days and it was a fantastic experience. I took some precautions like telling my GI I would be away and he was sweet to say he would be standing by if I needed anything. I carefully packed all of my medications and enough for a few extra days for just in case and kept all my meds in my carry-on. I packed pads and pantyliners for security along with some go-to snacks.
It was so fun to see friends and explore new surroundings. I took a wonderful teacher course too. However, there were some physical challenges. Eating differently didn't agree with me and I dealt with some loose stool and butt burn. Still, it was a wonderful trip.
I recently had an annual pouchoscopy (like a colonoscopy for the j-pouch) and a bunch of labs. My doctor was beside himself with how good the results were! My labs all came back normal, the scope showed no inflammation and my biopsies looked great: I no longer have pouchitis. Still, things are far from perfect. Being in an "advanced stage" of recovery still means I'm working on things behind the scenes. While I am able to manage my symptoms pretty well in my regular day to day life, it's like I'm walking a very thin tightrope and certain foods or hormones or stress or something else can throw me off for days. Case in point, I just ate a delicious tomato on Monday and today- 4 days later- the horrible burning is finally gone.
My doctor put it well: as we feel better, we get greedier. It's true, I remember when I just wanted to sleep through the night without getting up 10 times. I remember when I just wanted to be well enough to go to work. Sometimes I think that if my health were to stay the way it is now forever, I would be ok. But I think it's good to be greedy in this situation- patients and doctors will always want to keep improving quality of life. So as my world continues to expand in small and significant ways, my eyes start to set sights on what could be. I want to expand my diet to include more fruits and vegetables. I want to get physically stronger. I probably won't be comfortable traveling far from a good hospital for some time, but I do want to travel more, including traveling abroad. Eventually, I would love to be on fewer medications.
It's a lot to work on these goals alone and I'm feeling really lucky that my new GI office has a program to help patients develop skills to manage their health and achieve goals. They say most patients meet with their GI about 3 hours a year, so I'm excited for this program's holistic approach and emphasis on empowering patients. This fall I'll get a chance to work with a nutritionist, social worker, psychologist, gastroenterologist, and mindfulness instructor, and maybe even meet other patients with IBD.
And so the journey to wellness continues!
It was so fun to see friends and explore new surroundings. I took a wonderful teacher course too. However, there were some physical challenges. Eating differently didn't agree with me and I dealt with some loose stool and butt burn. Still, it was a wonderful trip.
I recently had an annual pouchoscopy (like a colonoscopy for the j-pouch) and a bunch of labs. My doctor was beside himself with how good the results were! My labs all came back normal, the scope showed no inflammation and my biopsies looked great: I no longer have pouchitis. Still, things are far from perfect. Being in an "advanced stage" of recovery still means I'm working on things behind the scenes. While I am able to manage my symptoms pretty well in my regular day to day life, it's like I'm walking a very thin tightrope and certain foods or hormones or stress or something else can throw me off for days. Case in point, I just ate a delicious tomato on Monday and today- 4 days later- the horrible burning is finally gone.
My doctor put it well: as we feel better, we get greedier. It's true, I remember when I just wanted to sleep through the night without getting up 10 times. I remember when I just wanted to be well enough to go to work. Sometimes I think that if my health were to stay the way it is now forever, I would be ok. But I think it's good to be greedy in this situation- patients and doctors will always want to keep improving quality of life. So as my world continues to expand in small and significant ways, my eyes start to set sights on what could be. I want to expand my diet to include more fruits and vegetables. I want to get physically stronger. I probably won't be comfortable traveling far from a good hospital for some time, but I do want to travel more, including traveling abroad. Eventually, I would love to be on fewer medications.
It's a lot to work on these goals alone and I'm feeling really lucky that my new GI office has a program to help patients develop skills to manage their health and achieve goals. They say most patients meet with their GI about 3 hours a year, so I'm excited for this program's holistic approach and emphasis on empowering patients. This fall I'll get a chance to work with a nutritionist, social worker, psychologist, gastroenterologist, and mindfulness instructor, and maybe even meet other patients with IBD.
And so the journey to wellness continues!
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