I didn't update for so long and now here I am updating twice in the span of a week.
I realized how fast the end of the year was coming and it motivated me to make an appointment to schedule surgery. The thing about chronic illness is that you will have days that are perfect and for a second you think that everything is fine. No matter how bad the bad days are, once you have a few good days linked together it seems to make you forget about all of the suffering, no matter how bad it was. Especially now that I am relatively healthy. I seemed to overlook the little annoyances about my ostomy situation that filled my life with anxiety in the past couple of months just because they were nothing in comparison to what I have been through. But I realized recently that my life was again becoming abnormal in a different way, and I needed to address it for my mental and physical health.
I saw a new surgeon today at the University of Penn and it was an extremely emotional, difficult day. I guess I didn't expect that I would need a surgery that would completely reopen me. Because of how terrible my current ostomy is, they need to move it to the other side of my abdomen. The first thing I thought of was that I'll have more scars and another adjustment to make in terms of how to manage my ostomy in general. I'll also need at least a month to recover because of how extensive the surgery is. Needless to say, considering I am healthy in terms of my disease, it was quite a shock to hear that I would need another big surgery to fix a seemingly minor problem. The more I think about it though, the more I understand that I have made huge adjustments to deal with this "minor" problem just because it was preferable to anything I've experienced prior. I'm just upset that the little normalcy in my life and relationships is being challenged, again.
I think the most frustrating part of it all is that I have always sought out the best doctors and surgeons. When I started having problems with Crohn's I went to the closest GI but I was then referred to a "specialist". From there I trusted someone to tell me who to see at one of the best hospitals in the country for dealing with my type of bowel disease. While I still love the doctor I saw at the U of Maryland, after seeing the surgeon at Penn, I understand that no one listened to me as much as they should have. That brings forth new feelings of doubt, feelings like I should have done more to press for what I thought I needed. It makes me feel like I wouldn't have an ostomy if I had just pressured doctors more to do things differently. But who am I to tell someone with a medical degree how they should treat me? It just sucks to feel helpless. It sucks that I have to have another surgery because in the opinion of my new surgeon, someone fucked up along the way.
None of my present problems can ever compare to what it felt like to be sick with Crohn's. But I will never stop wondering what I could have done differently, especially now that it's being pointed out to me that my disease and surgeries weren't managed as well as they could have been.
I think about another Christmas spent recovering from surgery. I think about the fact that most of the new people in my life won't really know why I am having surgery. I think about how far I have come in accepting myself and feeling confident even though I am different. I think about how much I miss my best friends who aren't in Philly to support me with their presence. I know it could be worse and I am grateful for the health I do have. I just wish that right now it could be different.