Today I got my abdomen marked with a pretty purple marker. I saw the wound and ostomy nurse at the University of Penn. My surgeon came to the conclusion at my last appointment that the current site of my stoma is too damaged to simply recreate another stoma there, so I have to have it moved to the other side of my belly. This is the part of my last appointment that upset me so much. I had no idea that this would be done and I would need another hospital stay, another semi-major surgery.
The appointment today was to decide where exactly I wanted the new stoma to be. I decided to essentially keep it in the same location but on the opposite side. Its placement right now has worked perfectly with the styles of clothes I wear and other factors. The nurse marked multiple places and had me move around a bit just to make sure the new site wasn't in an awkward place in a fat fold or something (yeah, I know I'm skinny but I still have those). Once we decided on a place she marked the it with a pen and placed a clear skin over it to preserve the marking until surgery. This is a practice that should have been done the first time I had surgery, but that option was never presented to me. It wouldn't have made much of a difference, however, it's just another little factor that bothers me in hindsight. In addition to my surgeon telling me that they should have adjusted my stoma from a loop ileostomy to an end ileostomy when they completely removed my colon, I've been feeling quite angry.
The past few weeks have obviously been challenging. I've been struggling with a lot of decision-making. This is the first time I can say that I am electing to have surgery to improve my quality of life. I know I always had surgery for this reason before, but this time it's different. This time I am trying to bring myself from a healthy state to a state that will allow me to not only be healthy, but eliminate the stress and anxiety that stems from constantly worrying about leaks. It's difficult to process. If other people had to deal with what I am dealing with now they would be in a mental institution (as my mom phrases it). But for me, I find myself questioning why am I putting myself through this when it's completely needed, but it's not something that's keeping me from living my life every day. I don't know if that's possible for other people to understand but it's the best I can explain. I know it needs to be addressed but it's hard when the decision isn't accompanying physical pain. Another factor I am questioning is that I basically called Penn and scheduled surgery with the first person who had appointments available. Obviously they hooked me up with a young surgeon who probably doesn't have much experience. I worry about this but I also think about the fact that very renowned and experienced doctors have failed me in the past, so I just have to act on my impulse that I felt comfortable with each of our meetings.
Anyway, through the midst of all of this I came to the conclusion that I needed to take the whole month of December off of work to ensure I finish up my semester as stress free as possible. Friday is my last shift at work. Then I have a lot of presentations and my final papers due the 11th. I won't actually schedule my surgery until my appointment again on the 6th but I was assured that I would be able to be operated on the second or third week of December. Luckily I am in a good financial state with supportive family, friends, and bosses, so I can take as much time as I need to heal. It just sucks. That's the only phrase that can summarize everything. It fucking sucks.
Now I just have to keep this purple dot preserved for the next two weeks. Guess I gotta keep the showers brisk...
11.27.2012
11.09.2012
Life and Ostomy Revision...
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.
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.
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