Inflamed and Untamed

Do any of you feel like you’d rather not be here anymore cause you hate the impact of your existence has on your family? I am sitting here right now crying and thought it would be a good time to start to write my first blog. I need to preface this by saying that I have wonderfully supportive parents who have been by my side through 12 years of ulcerative colitis, 14 major surgeries and more blockages and procedures that I even remember. I don’t know how I would still be here if it wasn’t for them.

However, no matter how supportive parents and family can be, there are still things they can’t possibly understand. I have an ileostomy now, and have fought for six years with kock pouch surgery since during the three years I had my last ileo, I couldn’t mentally handle it. I needed to see that I did everything I could in order to accept this bag. At the end of July 2011, I finally gave in to the fact that I couldn’t deal with unknown of the kock pouch and made the very hard decision to give up my fight and finally live my life with a permanent ileostomy. Once I made that decision, I won’t say it was “easy”, but I can tell you that I was really starting to accept it as a part of me and got in a good routine with it. I was OK finally. I felt like I had closure to the roller coaster of surgeries and hospitalizations. I really felt like for the first time in 12 years, I could breathe and just take life as it came since I know I did everything I could to fight.

In November of 2011, I was then shocked and dismayed to learn that I had pyoderma gangrenosum which is another auto-immune disease that causes ulcers on your skin. Mine happened to occur right by my stoma, making it impossible for the appliance to stick. I was changing it numerous times a day and couldn’t leave the house for fear that at any moment, the bag would leak because of my new diagnoses.  I also want to mention that pyoderma gangrenosum is chronic and that there is no one full proof way to go in terms of treatment. I was lucky in that it took steroid injections for months to eventually put the PG into remission, even though it had terrible side effects to my skin by that area. But, it was better than the other options and very real possibility that I could need these medicines in the future- remicade, humira,cyclosplorine, and prednisone. Mentally, I was completely derailed and thrown. Everything I had clung to and believed in when I made the decision to have an ileostomy was gone. I was and will continue to be faced with the possibility of another chronic issue affecting my ileostomy. It is because of this diagnosis that I have not been able to name my stoma, like I had during the three years I had it before. I cannot accept it as “the end” because at any moment (as with the ulcerative colitis and every complication I could imagine), there was a huge element of the unknown.

I know no one can ever be sure of their future but for me, I didn’t know how to handle this feeling of insecurity, instability, and discontinuity that I have had since I was 13 years old. Basically, I need to control what I could because I felt/feel like everything around me is falling apart no matter what I do or don’t do. I have come back a million times after really falling. I was a competitive swimmer (and a pretty good one, if I can brag a bit), and after every flare up, every hospitalization I came back into the pool and basically started all over again at the bottom, watching all my other teammates continue to move up. But, that didn’t stop me from fighting and getting back to where I was every single time. I even went to high school with a pic line and a drain in, only to then lose the entire school year because I got so sick and couldn’t possibly finish. For those of you in New York and know what regents exams are, I even had to take one in the hospital. College was awful for me- the starting and stopping and pretending, and having barely anyone around me who truly understood and watching all my high school friends have such an amazing time in school, when I couldn’t even go away and swim like I had hoped and planned to all along. I watched these “average” people pass me for no other reason than they had nothing that got in their way.

Now, as I sit here I am plagued by yet another issue and that is my extremely regimented life and my need for control to a point where it has affected my weight. I eat basically the same thing every day because I know exactly how my body will react to it and I know without any uncertainty that it is a “safe” food in that it won’t cause a blockage. I am really okay with this way of living because I know it is the only way I can get by day to day right now.  The ones who aren’t OK with it are my parents, who I love more than anyone in the world and who I am forever indebted to for all they have done for me. And I understand why they are concerned, I really do, but what they can’t seem to grasp is the impact the “changing things up” has on the ileostomy, and my mental state as a result. With the hot weather upon us, my weight has become more evident to my parents, and they comment which I know is done out of love, but I am sick and tired of hearing it. I happened to eat more last night and was up every hour and a half worrying about the bag leaking since the last time I ate more than I usually do, I woke up to stool all over me from the bag leaking. So, subconsciously I know I was worried about it and felt the need to go to the bathroom everytime I woke up because the bag was so filled.

We planned to take a boat out today and just relax but minutes before we were about to leave, my mom commented on how thin I was since I was standing next to her in shorts and a tank top. Then as I tried to explain the fact that I have to now “deal” with this bag and the output constantly all night and day since I ate more, my dad followed up with “well then you might as well continue to just eat” and “do other people have your issue.” I don’t know about anyone else but I hate being compared to other people and having my parents use them as examples of how I “should” be or use it to question what I am telling them about MY body and it’s reactions to certain things. I then proceeded to tell my parents if they wanted me to gain weight and eat more, I needed a colon (which I know is obviously unrealistic). Either that, or I could trade places with them for a day so they see the impact this ileostomy has on me every second of my life. This whole conversation ended in me telling them I didn’t want to go out anymore and they needed to go so I wouldn’t have ruined the day for them. I know this hurt them, and it wasn’t meant to. That is truly the last thing I ever want to do is hurt my parents. My dad had said “I Hate Us” since it’s always so difficult to make plans and in his words, “nothing is ever easy.”

I constantly wonder if I am being selfish by continuing to live and be a burden on them.  My need for control and security is solely caused by my illness and all the problems I have had. It is a constant battle in my head about doing what I think is “right” for me, and trying to please my parents. I know I need the routine so badly right now, and I couldn’t possibly live and handle this life that has been thrust upon me every day if I didn’t have it (for example, the impact doing something different last night had on my sleeping and day today). I understand my parents ‘side, as an outsider, I really do and am not in denial that I have major issues. But, as I keep telling them, I have bounced back more than people would in 50 life times and I need time to see that my body won’t betray me and I can truly just “be.”

Thank you all for listening to my frustrations and giving me an outlet to open up…I think saying this out loud to the world will help me in my path to acceptance and figuring out who I am. I read so many people’s blogs and think how therapeutic it must be to write it out for others to see, and also how you never know when you are saying something that someone else suffering is going through or thinking but can’t open up about it. I’ve needed to come out of “hiding” for a very long time but didn’t know how to do it and something in me today just made me turn on the computer the second my parents were out the door to write this. I appreciated all of the people who have continued to write basically all the things I could never say. You all have been my “voice” for a long time, and I am hoping that coming out of my shell with this one post will pave the way for me to move forward on this seemingly never ending battle.