Throughout the course of our lives, we are going to have ups and downs. We are going to be doing well for a significant amount of time only to have something unexpected come along and throw us off course. It hopefully won’t be something too traumatic but life is unfortunately a roller coaster. Hopefully you spend more time up than you do down! I have had a mini setback recently that I sort of alluded to in a previous post but it is honestly really hard to talk about, or to even think about. Having said that, I do think it would be good for me to get some of these things that I bury out. Bare with me since this is honestly something I truly despise thinking about but I know denial never works for me so I am doing my best to acknowledge it here.
My ileostomy bag leaked two days in a row and just doesn’t feel like it is sealing on my skin the way it used to. I was thrown when it leaked the second time and I got extremely upset. After I changed the appliance and cleaned myself up, I started hysterically crying and I got very anxious. My mind started thinking about all of the things that I so desperately try to keep buried. The fact that I DO have pyoderma gangrenosum (a chronic auto immune disease that causes ulcers on your skin; most often by a stoma or on the leg) is something that I try to forget. I try to pretend it isn’t a part of my life but deep down I know better. I think that is a lot of where my anxiety comes from which causes awful migraines which doesn’t allow me to sleep and round and round we go. I hate the word “pyoderma gangrenosum” because not only is it completely foreign to most doctors and the general public but it is annoying to spell. I just say PG but then doctors have no idea what I am referring to.
I hate that only 1-3% of people with ulcerative colitis and crohns disease get this and I am in that small percentile. I hate the fact that I gave in to having an ileostomy so I could have closure and some semblance of certainty when it came to my health and now I don’t have either. I hate the fact that there is a very real possibility that I could need remicade again or humira, or God forbid prednisone. Now, I have an ileostomy WITH pyogerma gangrenosum. I would have been perfectly fine living with the bag and only the bag because I knew I had exhausted all measures and this at least gave me my quality of life back.
I did need to expunge some of those things I just ranted. But, do you see why my mind went to all of those places from my ileostomy leaking two days in a row? To me at least, it is completely understandable why I would feel all of those things I just mentioned. And when YOU have a situation that looks like it could be a setback in your life, for whatever reason, doesn’t even matter what it is… try to do exactly what I failed to do initially which is to put things in perspective. Break it up into smaller pieces and ask yourself questions.
Do I have to love, like, or accept having PG right now? No.
Does the name of my illness really matter or is it just another thing that I dislike about it and it sounds like a good thing to rant about? The name clearly doesn’t matter. It is what the PG represents to me.
Is there a chance that I could need some of those medications that I previously mentioned? Yes.
Do I need to concern myself with this now? Has any doctor mentioned it? Have all options been exhausted? No, I haven’t even received confirmation that the PG is back.
Anyway, I think we can all agree that the ups and downs we experience can often escalate in our minds to seem more insurmountable than they actually are. Writing has helped me sort through some of those questions when I feel so overwhelmed and upset like I did the other night. Once I began writing in my journal, I realized that I was overreacting to a situation that hadn’t happened yet.
Let us all take a deep breath (after we go through whatever emotions we need to experience) when we feel like we are going to be faced with some type of challenge, obstacle, or setback in physical or emotional recovery, break things down and really evaluate the situation from a more rational place …more often than not, the situation isn’t as bad as you feel.