Hanging in there


outside my front door

I have not been myself lately.  Not at all.  I am depressed(ish) and terrified (very) because in three weeks and two days I'm going to check into a hospital in San Francisco and when I leave five to seven days later, I'll be minus my colon and will have what I sincerely hope is a temporary ilestomy.  It may end up being permanent, so I'm trying to be okay with that outcome, too.  Just in case.   Luckily, a girl can still buy cute underpants and a special belt to wear while swimming (maybe hopefully surfing), so it's not like it would be the end of the world.  Right?

95% of the many, many times I think about the surgery in a day, my blood pressure starts to rise and it gets hard to breathe and my shoulder and jaw and diaphragm muscles all kick into action.  Half of that 95% of the time I start to cry.  About 5% of the time I think about how much better I'll be in the long run, not having constant GI bleeding (from my now untreatable ulcerative colitis) and no longer wanting to go to sleep in the afternoon and at dinnertime.  I will be able to go for a walk without the unbelievable amount of stress that causes me right now.  I will be able to travel.  I will leave behind a huge amount of stress and will save a freaking fortune on not buying so much toilet paper.  I can go for a bike ride with my family and enjoy all sorts of things that right now I either cannot do, or doing them is so stressful that it's nearly impossible to have a good time.  

It's so frightening, though, all of this.  The part where I'll feel good enough to go do things is pretty far off and the time until then is going to be challenging in ways that I have a hard time thinking about.  When I was little, I used to have a dream that my abdomen had been sliced open from hip to hip by some bad guy with a sword, and in the dream I'd be trying to put my spillingout intestines back in my body.  After my c-section with Willow I was sure that the stitches would break open and all my guts would fall out.  So this feels a lot like that, only this time things REALLY ARE going to fall out of me. 

I'm having a half of the 95% of the time moment here and am crying.  Awesome.

I am lucky, though, to have so much help.  My mom is going to stay in the hospital with me full time for as many days as I need her, even though she works and has a whole lot going on at home.  Scuba has been so great, taking care of the kids because I'm sick and exhausted, buying us groceries and cooking and cleaning and letting me rest and bringing me pho.  This weekend is my last kid-free weekend before the surgery, so he's taking me to Monterey.  I might sleep a lot of the time while he goes out to dive or surf, and I'm sure that the beach we hang out at will be the one near the bathrooms instead of one of the prettier, less crowded ones, but it'll be good to take a break from all this stress. 

I'm too distracted to read much other than patient blogs and stories of people who've been through this before.  That's been really helpful, as was the preop visit with my surgeon.  He's a funny guy, and very experienced and confident that I'll come through this all perfectly.  I'm not looking forward to waking up in the afternoon or evening on March 22nd in a lot of pain with a drain sticking out of my abdomen and an NG tube to keep my stomach empty so I don't throw up, and - of course - the bag, but if I can hang in there and get through this and then through the second surgery where they put me all back together again, then hopefully by this time next year I'll be looking back and wishing I hadn't waited fifteen years to make this change. 


I'll be rooting for you Jen! A good friend had 16 inches out about 12 months ago and is bag free now! It'll be worth it, scary as it is!

My fingers are crossed for you. If it would help, I'd tell you about my aunt and her colostomy bag, and my uncle and his kidney failure when he was in his 20s, but those stories probably wouldn't help.

Take care of yourself.

Wow, Jen, so much on your plate! The crying and fear sound perfectly rational and healthy. But to get your health back and all the hope that offers, I too am rooting for you. I hope your weekend is peaceful.

Holy crapoly. I didn't know you were going through this. I guess I've had my head buried in my sandbox too long. Lots and lots of good healing thoughts are now coming your way to join everyone else's. That's a lot to take in and deal with. If you're ever online late at night panicking and you see me on - never hesitate to ping me for a chat.

You are such a brave girl with so much to look forward to, Jen. Heal well, sweetheart. I'll be sending healing vibes to you from Topanga. xoxoxo

My prayers and thoughts are with you. I've been reading your blog for several years and I feel like I know you. I realize you don't have the same connection with me, but I wanted to let you know that I'm in your corner and sending positive thoughts your way and hoping for the best. Hang in there!

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