I am still really enjoying NOT being hooked up to tubes and NOT carrying around Edgar. I still reach for him every time I stand up or get out of bed. Then a little thrill goes through me, because he's NOT there anymore!
The wound is doing okay. It actually is feeling very sore and raw. I think that the WoundVAC helped to protect it and hold the edges together. Now when I sit, I feel a little bit like I'm splitting in half! As I now am responsible for performing my own dressing changes (an acrobatic feat in and of itself!), I get to look at the wound. It's big. It's ugly. It amazes me that it's only a third of the length and 1/16th of the depth that it was 3 months ago. It was HUGE at the beginning. This healing process has shown me in a new way that God has designed our bodies amazingly.
I saw Endo Doc early this week. It actually made me a bit depressed. She really thinks that I will be steroid-dependent forever, which of course, I did not want to hear! This means I will continue with my two different steroids, one once a day, and the other three times a day, for life. But thankfully, I am stable on my current dosage, and we have a pretty good system in place for managing my steroids on those days when my tummy is not working right. We will give the taper one more try once my wound has healed completely.
I am also working on healing emotionally right now... as I hit the one year mark of having my J pouch removed and all the complications that followed, I've realized that I've been through a lot! I've been sort of preoccupied with intrusive memories that I'd rather not have replaying in my mind! Anyways, God has provided numerous informal opportunities for me to reach out to other patients going through surgeries for IBD. This summer, however, I began to actively seeking out opportunities. After all I've gone through, I really want to reach out to others facing these challenges! This has been in the works for a long time now, but I will be revamping Semi Colon very soon to better explain my "story," and to provide more helpful information for others who are going through similar surgeries/dealing with UC/Crohn's.
So - to share just a couple of this week's very interesting and wonderful opportunities! First, I spoke to an ostomy support group about life with Squirt. They probably were more wonderful to me than I was helpful to them! It was great. Each person there has been through a lot, and has a unique and incredible story of how they got their ostomy. I met an ostomy nurse there, and I asked if she was able to give my name and contact info to patients. She is, so I gave her my info... and the next morning, I awoke to an email from the nurse regarding a couple patients. Turns out that there's a patient in the hospital who has a story that's incredibly similar to mine...
I went to visit Nadia yesterday. She vlogs and blogs quite extensively about her experiences - check out her popular site here. Meeting Nadia was awesome! Nadia is basically my clone! We felt like we were telling each other our own story - right down to pancreatitis as a rare side effect from a medication we took, to pouchitis resulting in permanent ileostomy... the similarities were crazy! She is going through quite a bit right now - she just transferred her care here from out of state, and is in the hospital for an abscess - another aspect of our lives that we share! She is new here, in this hospital for the first time (and pretty tired of having to relate her complicated health history to every new doctor or nurse!), emotionally adjusting to having a permanent ileostomy - yet, through it all, she has a tight grip on her sense of humor and her strong spirit shines through! Please pray for her recovery, for less pain and nausea, and for comfort! It was so very clear that God had wanted us to meet that it was giving me goosebumps!
Finally, my dear friend Kendra (fighting Follicular Lymphoma) had scans today - she is halfway done with chemo. Her scans showed some cancer, but the doctors are pleased with how things look and believe that she will be in remission after she completes her 6 rounds of chemo. Unfortunately, she was not able to receive her chemo today because her blood counts were too low. Please pray for her body to crank out more healthy cells (but for the cancer cells to DIE and never come back!). Please pray for her and her husband, Stephen. They are both under quite a bit of stress right now, understandably!