As promised, I wanted to do a follow up post on life with my new ileostomy bag. The response to my first picture (originally posted on Instagram) showing this lovely new accessory of mine was mind blowing. I read every single comment and message I received after posting, and I cannot put into words how great that support felt. I've received a lot of questions about this bad boy so I've broken this down into sections. And I also lied to you before, this is a another lengthy post, another semester's worth of reading if you will. But I have a lot to say and I want to cover everything I've been asked, so here we go.
How's my mental state? How did I feel before and how do I feel now?
This one is my favorite (and the longest). I touched on this in my last post, but the idea of this surgery was the end of the world. I said it before and I'll say it again, getting this surgery was worse than having cancer. I am WELL aware of how absolutely crazy that sounds, but it's how I felt. I mean let's break this down to the basics - I have a bag hanging off my stomach that fills up with you know what (and if you don't know what, it's digested food). You're welcome for just putting that out there, but that's the reality. I'm human and I care about what I look like. I didn't want to deal with it, I was scared about what people might think and didn't want to be looked at differently. The concept in general really scared and upset me. The day of my surgery, I was mad that dooms day finally arrived, but I was also oddly calm. Surgery doesn't scare me, and I was also just in a major state of denial about what was about to happen to me. It wasn't until the surgeon came in to mark where my lovely new bag would sit that I absolutely LOST IT. I mean, there have been a lot of tears this last year and a half of health hell, but this was serious can't catch your breath crying. We're talking hysterical tears, to the point where my surgeon more or less said he can't ethically operate on someone this upset and against the surgery. They gave me some magical IV drug to calm me down and in I went.
The first week with Gertrude (oh, I named the bag by the way. Why not right?) sucked. I was in SO much pain and seriously upset and depressed. I couldn't look at the bag at first, and then really lost it when I had to change the bag for the first time. Sorry to be graphic here, but looking down and seeing a little stump, if you will, of your intestine sticking out of your stomach is seriously weird. I still have trouble looking at it honestly. But it is what it is.
I gave myself the first week at home to wallow and be sad and cry. You go through the grieving process with something like this. So those first few days were set aside for tears and sadness and anger. Then those days were up and it was time to pull up my bootstraps, as my mother would say, and get it together. It's so true though - what good would wallowing and crying do? I gave myself a pep talk and said, "You're stuck with this for now, it's saving your life, time to accept it and move forward." So I did. Yes, it freaking SUCKS and I hate this dumb thing so much and it makes me different, but so what. I forced myself to accept it. The people that love me don't care, and the people that care don't love me. Posting a photo on Instagram showing my bag so soon after surgery might seem crazy to some people, but it was my way of making myself accept it. And I'm SO glad I posted that photo. Like I said in that photo caption, we all have things that make us different. The sooner we accept and embrace what makes us different, the better off we'll all be. I get asked all the time how I'm so positive about it so soon, and that's kind of tough to answer, but honestly I just made myself be that way. I didn't feel like I had a choice to be anything but positive, and the sooner I started the better off I'd be. No one enjoys miserable people, and being miserable is miserable. So why be miserable, ya know?
Long story short for this section; I was in a much darker place before the surgery than I am now. Maybe I'm weird and maybe it's unhealthy to just force yourself to be ok with something so major, but so far it's working.
What's the recovery been like? What's life like now?
I was in the hospital for three days recovering after surgery, but I honestly can't tell you a single detail about that stay (thank you pain meds). I don't remember a thing. It's like a bad three day black out, but honestly I'm fine with that. The days immediately following any surgery are never pretty. After my hospital stay, I spent a week at my parents letting them take extra good care of me (thanks mom & dad!). It was also nice to have the company and people around for that first week of transitioning. Going into this, I was expecting to be couch ridden and miserable for almost a month, but it really was only that first week that was really rough. Since then, I'm back at my apartment slowly getting back into my routine.
It's been three weeks since my surgery, and I've already gone to a few events, had dinner with friends and been social (as opposed to the hermit crab I was before). I'm still in pain, and sometimes the pain is pretty darn awful, but that's to be expected after major surgery. I'm doing a lot of resting still and being careful not to push it, but I've been able to do more in the last two weeks than I was months before this surgery. Don't tell my surgeon I said this, but it turns out this bag is not the end of the world like I thought it would be. I hate Gertrude, don't get me wrong here, but I can't tell you how nice it feels to grab a bite with friends and actually enjoy being there. Before I either didn't go out, or was miserable and constantly thinking about how miserable I was. That's no way to live. And side note here, I was considering continuing that terrible lonely life to avoid this surgery, that's how against this I was. I'm SO glad I didn't make that choice though. The other day I was dancing around my apartment cleaning and listening to music. It's easily been a year and a half since I felt good enough to do that. I went to brunch last weekend. Last time I went to brunch there was snow on the ground. These little occurrences are major victories to me.
To anyone that has to have this surgery and is dreading it as much as I was - I get it. Oh do I get it. Every negative thought and end of the world scenario you're going through, I was there. Before I had the surgery I had plenty of people tell me it's not that bad and I'll feel better and it'll all be worth it. I thought I was different and there was no way in hell this bag would ever be worth it, etc. My advice to those of you in that boat - it really isn't the end of the world and life will go on after surgery. And I NEVER in a million years thought those words would come out of my mouth. I can't stress that enough. It's not awesome or ideal, but it's not the end of the world. I get it, but I also didn't believe that until I went through this and was on the other side.
So do you feel better now? What's next?
I'm slowly starting to feel better. My Crohn's hasn't just gone away and is magically better because of this surgery. I still have active inflammation, but this surgery allows the inflamed part of my colon to have a break and heal. I started a new medicine, Cimzia, that is supposed to help put my Crohn's back into remission. I'm still in the recovery/healing stage, so there's still pain from time to time, but nothing compared to what I was dealing with before. The plan now is to give Cimzia some time to start working and the inflamed part of my colon time to rest. I'll do a follow up/status update with the docs in a few months and go from there.
Ok, Mallory, wrap it up.
I've been dealt a crummy hand. There's no denying that dealing with cancer and Crohn's (not to mention serious cases of both) seriously sucks. However, I have the power to decide how I deal with these cards and how I move forward. I want to be a resource, a voice, an inspiration - anything I can be for people dealing with similar situations, or anything tough for that matter. To my ostomates - let's embrace these dumb bags of ours and not let them get the best of us. We are still the amazing people we were before the bag, now we just have an extra accessory and constant reminder of how STRONG we are. Same goes to my fellow spoonies, our diseases don't define us and you're all amazing. To my friends just having a bad day, ask yourself if what's upsetting you will matter in 5 hours or 5 days. If the answer is no, move on! Life is far too short to get hung up on the little things.
I will do another Ileostomy update post again soon and address new questions, how I've adjusted to getting dressed with this thing (short answer, I bought this) and what life is like a month+ after surgery. Anything you want to know, send it my way!
I love you all! Thank you for following my story and supporting me along the way.