Life, now..

I have a chronic illness.

For the rest of my life, I will carry the weight of my struggle with Crohn's disease through every job, every relationship, and every endeavor.  Even when my body is healthy, my mind will always remember the past.  I have an illness that will always make me tired.  I will cautiously tread and wonder if at any second it will become active and I will have to explain to a new set of managers and coworkers that Crohn's disease is serious; that it is not something to be laughed at because it involves shitting and puking.  Each new relationship I will remember the friendships and romantic relationships that failed me before because I was ill.  Each time I embark on a new adventure I will doubt my ability to complete the task.  Even though I am healthy now, I still feel the effects of my illness.  I will never believe in certainty.

I always thought when I was physically healthy my life would be perfect.  But, life is much more difficult than that.  In the past year I started a new job, moved out on my own, ended a relationship, fell in love with someone new, traveled, stressed, had another surgery, and made new friends.  But with each of these accomplishments that wouldn't have been possible without my health, I still wonder what could have been.  It is impossible to squeeze ten years of bad health into two of blissfully good health because it results in nothing but dissatisfaction.  I have to believe there is no timeline for the accomplishments one is supposed to achieve at certain points in their life.

I still struggle with depression which I believe is a result of the residue of Crohn's.  It is a true statement of resilience that when I was deathly ill I never felt seriously depressed, but now that I am living a "normal" life with the effects of illness, I find that I struggle with this problem.  I guess when you are going through hell you find a way to make it through and it's only after the storm has cleared that you have to deal with the aftermath.  That's where I've been for a while now and I am not certain that the recovery effort will ever end.

Don't get me wrong.  I am happy for the most part.  I am healthy.  I have the greatest support system in my friends, family, coworkers, and boyfriend.  But I still hate what Crohn's has done to me.  I have to remind myself of all positive traits it has added to my character that might not have been possible otherwise.  I know it has made me a better person but I am not so certain that the benefits of its lessons have outweighed the damage it has permanently caused.  For now I have to embrace what is in front of me and remind the goodness in my life.

A Canadian journalist named Robert Mason Lee (who I've linked here before) once stated that those afflicted with Crohn's become pain-seeking people.  That they are so accustomed to feeling pain they need to feel it even when it's gone.  I believe his theory but I am tired of feeling pain.  I am ready to be happy and healthy.  I am done with seeking pain because it feels normal.  I am ready to be happy and I have a feeling I am headed there.

Surgery Day

Surgery scheduled for Friday, December 14th...for anyone who still reads this thing.

I had an interaction with my professor this week that I'm compelled to share.

I had to provide a doctors note for missing class once during the semester.  It was an ostomy-related issue and probably my own fault for not accepting that I need to carry extra supplies on me at all times right now.  Anyway, I missed class and got a note from my surgeon, which I provided to my professor who has a reputation for being an asshole when people miss class.

So I took my final on Thursday.  I was the first one done and my professor followed me out the door and asked me how I was feeling.  He asked me what I was having surgery for, and I vaguely gave him a Crohn's-related explanation.  Keep in mind my doctors note was from the U of Penn colon and rectal surgery office, so I'm sure my professor had a loose idea of my issues.  He then offered me an extension on my paper, which I declined but thanked him for.  Then he told me that he had a large portion of his bowel removed once and still has an ostomy.  I didn't share my own ostomy story with him but I emphasized my sympathy for him and he told me about one of his undergraduate students who was going through a rough time with Crohn's right now, too.

The point of my story is that you never know what anyone is going through.  I try to live my life consciously aware of this fact anytime I am confronted with someone whose negativity bothers me.  You just never know what's going on behind closed doors, what kind of struggles people are battling, or why their behavior is the way it is. 

Just a little something to think about.  

Tomorrow..

Tomorrow (or today) I will find out my surgery date.

I will head into this surgery healthier than I have ever been before such a procedure.  I'm heading it to it with knowledge of completely what to expect. So why is it harder?

It's harder because it's not black and white.  It's not that I'm doing this surgery because I absolutely have to, like every other surgery I have ever had.  I am doing it to improve my quality of life.  To endure physical, emotional, and financial hardship for the next month because I know this small suffering will benefit me indefinitely.

It's harder this time because I have a life.  I have my own apartment, a great job, a fulfilling graduate school program, and supportive people in my life. That's pretty much everything I have ever verbalized here.  It's harder because there's more to lose when you're heading into a surgery as a person who has a life waiting on the other side.  I never had that before.  Before, no matter what happened after surgery, I only had to answer to myself and my family.

A month.

I shouldn't complain, nor fret.  It's just a month.  It's not my life.  I will emerge on the other side even better than I am now.  It's nothing in comparison to the past.  It's just a reminder to be grateful for my health and the fact that I have the most supportive friends and family I could ever need.

Be grateful for your health.  Please.  I am.  Every damn day.

Oh, surgery...

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...

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.

Still Alive

Okay.  So I know I haven't updated in a very long time.  There were a couple of occasions where I felt like I could have said something but the past several months were marked with such unpredictability I couldn't say precisely where my life was headed.  Then I realized that I will never know for sure and that's exactly what my life is allowed to be at this moment.

When I say that a lot has happened in the last several months, it's an understatement.  I left a job I was extremely secure at and found a new job in downtown Philly.  I moved out on my own to an apartment not far from my work and began a new chapter in my life.  A new volume, perhaps.

It was a more difficult adjustment than I imagined to live completely on my own. I am lucky enough to be financially secure, but I wasn't prepared emotionally for what that type of drastic change would bring.  I felt like a million things happened at once and it was overwhelming, but I got through it. I am still getting through it.  I am working full-time, living on my own, paying my own bills, going to school full time, and still dealing with chronic illness. The truth is, no matter how healthy I am, I will always deal with Crohn's.  That will never change.

I should mention the small problems I've had with my ostomy.  I've been having a lotttttt of issues with my stoma and saw a surgeon at the University of Penn last month.  He recommended I make some changes, which I did, with little positive result.  I've basically been complaining about my stoma since I first had surgery in 2009 and none of my doctors have ever listened to me.  I was actually shocked that the surgeon at Penn looked at it and agreed, basically telling me, "They set you up for failure with this".  I could go into detail about what a stoma should look like and how it functions, but it's not important.  Many surgeons are reluctant to make such a minor operation to correct the mistake of another doctor, so it was impressive that he listened and sympathized with me. In his words, I have to live with this the rest of my life so I might as well have a stoma that functions exactly the way it should.  The next step will be to schedule a minor outpatient surgery in December or January when I am on break from school.  It's not a big deal at all and it won't require a huge recovery time like past surgeries.  

Otherwise, the last time I posted I talked about how I came off my anti-depressant, but recently I went back on another form.  It was hard to admit to myself that I still needed medicine, but I've been better since I started back on it and while I know it is not a permanent situation, it's what I need for right now.  I'm okay with that.  I went through so much to get my body healthy, it would be shameful to let my pride stand in the way of keeping my mind just as secure.  I know a lot of it has to do with the ostomy issues and feeling like I lost control again in the same way I was when I was really sick.  So I'm looking forward to getting all of this straightened out.

I think I also realized how active I need to keep my mind.  I took the summer off from school and felt like I made a lot of bad decisions in that time because I had too much idleness that I couldn't bear.  I need the structure of school, the discipline, the mental stimulation, and the tremendous challenges each of my courses brings.  While it's stressful, it's also what makes me tick.  I love learning.  I love being challenged.  And I love that every time I leave class I feel like I am a better person because of the knowledge I've gained.  Through school I've also become more confident in myself.  Throughout every job I've ever had, other people always believed in me more than I believed in myself.  Now that I am in a truly competitive academic environment, I understand how much this is true.  I am learning to accept the praise that accompanies my hard work.

Perhaps the most difficult lesson of the past year has been understanding that healthiness doesn't equate to happiness.  I always thought once that part of my life was restored then everything else would fall into place.  But life is a lot more work than that. And I'm willing to work my ass off for my piece of happiness.

Till next time...

My Latest Milestone

It's been about a month since I have been completely off medication.  This is the first time I can say that since 2001.  Naturally this is a huge milestone for me, albeit a frightening one.

I haven't been on Crohn's meds in a while but over winter break from school I knew it was time to wean off my anti-depressant.  I know that I do not suffer from chronic depression and mine was merely situational, but it was still a scary thought to finally rid myself of that last medicine, because I know how much it helped me.

I admit that coming off this anti-depressant was hard but I am not sure it could ever be easy.  I lingered on my lowest dosage for weeks and when I finally went to the doctor he told me I should just stop taking it.  It was a weird thought for me to go to bed that night without taking medicine.  Maybe I invest way too much thought into these simple routines but it was hard to let go of that last crutch.  Even though the amount I was taking for the past few weeks was likely having little effect, it was a big moment for me.

I began taking an anti-depressant almost two years ago after I started seeing a psychologist.  Even when I started taking it I wasn't sure I actually needed it, although friends and family members assured me it made a difference.  I am still not quite sure of the extent of its impact.  When I started taking it my circumstances were far from anything resembling "normal" so it is difficult to assess the exact affect it had.  What I do know is that it leveled my moods.  I stopped randomly crying in my car.  I no longer went from high to low in a matter of minutes.  This part of my emotional well-being I can say it improved definitively.

But, I also know that I needed someone to talk to as well.  I know that it was a combination of therapy, medicine, and my resiliency that healed me.  No one of these things can be isolated as the sole reason I am sitting here today managing a full-time job, pursuing an education, and maintaining a social life.

Sometimes in the past year I felt like my anti-depressant use kept me from crying.  I felt like I was supposed to cry more than I did.  Maybe I had gotten so used to crying that I expected it was a normal part of life and something I would do when I experienced great sadness.  When something really bad happened I often thought, "I should be crying.  I want to cry."  But then I had a conversation with a friend recently who reminded me that I was never someone to wear my emotions on my sleeve in the past.  And since being off medicine in the past month I've realized this is true.  The only reason I cried so much before was because of my illness and it is completely okay that I can greet stress and hurt now without tears.

And yet, while I am aware of these things, I cannot help but be afraid of the possibility that I am not as happy as I think I am.  I tend to over analyze every moment of anger and attribute it to the fact that maybe I do need to be back on medicine.  This is just a fear that I need to debunk in time and I have a feeling once I get through this next semester of school I will be completely comfortable being med-free.

Otherwise, life is great.  Stressful, busy, and crazy at times.  But I wouldn't trade a minute of it.