Now, since developing UC I have found that my tolerance for pain is pretty high! Not too much will phase me. But, er, uh…this right here…what I gots going on right hurr with this little reconstruction, pouch surgery, loop ostomy sitiation (yea that’s right sitiation. Sit-E-A-tion!) is ridonkulous!!! This ish HURTS! And not just hurts, but burns. And not just burning, but aching. And not just aching, but exhausting! Absolutely exhausting! I’m freakin’ exhausted! Oh and frustrated! Did I mention I was frustrated?! Not so much with the surgery or the results of the surgery. But my loop ostomy is not really shaped like a permanent or semi-permanent ostomy, so it’s not really cooperating with my lifestyle of moving around and being mom to a rambuctious toddler. In fact it’s kinda slowing me down! It’s cramping my style. Needless to say I am over the stoma life! The fact that I have had to change these wafers 10 times in the last 3 weeks has brought me to this point. The point of, “I’m over it!”
I almost feel like I’m back having UC. I’m afraid to leave the house because I’m afraid of having an accident or being in too much pain. I’m tired all the time. The amount of guilt of not being able to be super active with Jax is immense. I hate going to the bathroom. Missing great moments and events all because of surgeries and bag difficulties and pain. Everyone who has a perfectly good colon in tact has an opinion about how you should feel about having to change your bag. They have an opinion on how you should deal with your pain. They have an opinion on how you should deal with your loss. Yes, your loss. You’ve lost something you came into this world with and now you have to learn how to live without. I’m sorry, but telling me to toughen up when I’m probably braver than you, is not helping me! It takes a little longer than a couple of weeks to get use to…to…to…everything! Waking up with poop on your stomach is not normal. In fact it’s quite jarring and weird. It affects the psyche a bit. Yes all of these people with stoma’s are grateful for the second chance at life. Grateful to be pretty much pain-free. But that doesn’t me that you don’t have that moment when you get out of the shower and look at yourself in the mirror and wish it would all just go away. There aren’t times that you don’t close your eyes and try to remember what your stomach looked like when it was intact and normal. Everyone talks about the new normal…Hell I talk about my new normal. But there is nothing normal about any of this. It’s just become my reality.
I guess today I’m a little tired of reality. Today I’m wishing for normal. I’m taking a moment to be mad, so that tomorrow I can be grateful. Truly grateful. Not that fake plastered smile grateful. But thankful to God. I don’t care who thinks I have no business being mad or sad. Today I’m missing picking up my son. Today I missing taking him different places all by myself. I know it’s coming. But it isn’t here today. So today I’m allowing myself a moment to miss it. Today I’m gonna stop acting so superhuman and strong about what is going on and just try to be human.
January 24, 2015 @ 4:37 am
Thank you for sharing this. I am presently 3 weeks away from my last of three jpouch surgeries after suffering from UC for seven years and I have a beautiful two year old who I’m not supposed to pick up. I’ve had an ileostomy for seven months and it has never been easy to care for because of a muscus fistula but after the second surgery, it is really challenging to figure out how to care for. Fear of soiling myself from my belly is keeping me home bound more than I would prefer. I’m having a difficult time articulating my needs to family and friends when I’m tired of being sick and recovering from surgeries while knowing I’m not quite done yet. I want control over my life. So many things you mentioned in this post make sense to me. I hope you are doing well now.