Sunday, March 31, 2013


i'll never forget the moment i woke up from surgery on november 27th, 2012, minus my large intestine and plus one dreaded ileostomy.

i was lucky. my surgery, while suggested, scheduled and done fairly quickly- was not an "emergency" surgery. though i didn't have a lot of time, i did plan it and did my best to prepare for it. even though my thoughts usually went along the lines of, "well, no matter what i will only have the bag for a couple of months so it doesn't matter", i still wanted to be aptly prepared for what that would be like when it happened.

just as i'd done when i was diagnosed with ulcerative colitis, i found a world of resources and communities of people who were going through and had gone through what i was about to do. some of them had cancer and had permanent ostomies. some of them had ulcerative colitis and had temporary ones or had moved on already to the j-pouch. there were blogs, forums, guides with pictures and videos...all kinds of stuff. at first i looked at pictures or illustrations on medical websites. then i got brave and started visiting blogs of "ostomates" as we're called ;) and even found videos on youtube of people talking about their ostomies, changing their bags, just showing what it was like to have an ostomy in general.

i remember watching one girl's video- she was my age and had had ulcerative colitis, too. she was in the process of the j-pouch surgery and currently had her temporary ileostomy. she made a video where she showed how she changed her bag. she had a wonderful attitude, friendly and cracking jokes, not getting upset when her stoma decided to go all mt. st. helen's on her during the video. i watched the whole thing without moving. when the video ended, i burst into tears.

that's going to be me, i thought. i'm going to have a piece of my effing intestine sticking out of my stomach so i can crap into a bag. i'm going to be technically incontinent. i started the video from the beginning again, in awe of this girl's positive attitude. that's going to be me.

i stopped crying. i told myself to accept it- it would only be temporary. maybe i would be just like this girl after a few weeks and think it was no big deal. and i wasn't even going to have an ostomy for that long, so who cared if i didn't?

that was all good and well until i woke up from surgery, with my stomach covered in bandages and a pile of gauze heaped on top of my stoma. i lifted them to look and felt like my world had ended. no amount of video watching, pictures or blogs could have prepared me for what i felt in that moment.

i had an ostomy- literally something i'd dreaded since first being diagnosed with UC. i had an effing piece of intestine sticking out of my cut-up stomach. and i was alone.

nobody around me had an ostomy. none of them could possibly understand what it was like to wake up and see that thing, to know that crapping into a bag attached to my stomach for the next couple of months was now my reality.
and maybe permanently, a little voice needled in the back of my mind. after all, there was always the risk that the j-pouch surgery would fail and i'd end up with a permanent ileostomy. it was a risk i knew going into it, and a small risk, but a risk nonetheless. i took it, because i really didn't have a choice. as my surgeon told me quite bluntly, i had six feet of rotting flesh inside of my body. it didn't respond to treatments. the meds keeping me alive would shorten my life, riddle me with side-effects, and it was almost certain i'd end up with cancer- and SOON, not later.

but none of that mattered when i woke up and saw my stomach. what followed was a breakdown the likes of which i have only had once before (not long after i'd been diagnosed). i was raging and crying and kept saying that i'd wished i'd died in surgery rather than lived and had the ostomy. when the nurses came in to help with the bag, i turned my face into the pillow and disconnected myself, refusing to have anything to do with it. i couldn't believe that this was my reality, that i had willingly done this to myself. i kept telling myself i'd have been better off taking my chances with the UC. i kept thinking that somehow i'd be one of the 5% whose j-pouch surgery would fail, and i would have this bag forever. i told myself there was no way i'd live if that happened.

one of my nurses, whose name was john, came and stood by my bed. he wanted me to look at him, to look at and acknowledge my ostomy. i was so drugged and out of it that i can't remember word for word what he said to me, but i remember it was something along the lines of, "you are young. you have so much to live for. you are not going to let this define you no matter what happens. you will be stronger and will be able to have a great life that you wouldn't have had without the surgery." i remember asking him through tears, if he thought less of me because i'd had such a huge breakdown.

and i remember him gently answering, "of course not."

i won't pretend that suddenly, i was filled with the will to thrive and everything got easy and i was okay with my ostomy and yay yay yay. it wasn't like that. i DID decide to change my attitude after john's pep talk and the rest of my hospital stay was positive and honestly pretty great for a hospital stay of such a nature. however, i had some dark moments ahead of me. i was in the hospital again only a month later from an obstruction- something common with ostomies that i'd REALLY hoped to avoid with mine being temporary. afterwards i came down with pneumonia and had to reschedule my second surgery four times.

the first two times that i had to reschedule, i cried and had a pity party and all of that. i didn't want to have the ileostomy any longer than i absolutely HAD to, and the time had already been doubled by the turn of events. however, after a lot of prayer and soul-searching and just TIME...i came to accept having my ostomy. i knew that i needed to prepare myself for the chance that it would be permanent, even though i honestly feel like the j-pouch will be a success for me, i didn't want to be caught completely unprepared if the worst were to happen. with each rescheduling, i learned to trust in the Lord more and more. i knew 100% and STILL know, that there is a reason my second surgery didn't happen in the past couple of months. i learned to surrender MY will with this, to the Lord's will, which is one of the hardest things i've ever done.

i finally found myself able to say, "whatever is best and whatever is right. if that includes me having this bag for the rest of my life, then i am okay with that." i trust the Lord and His plan for me. i have said this a million times by now, but no matter how hard certain things have been to go through, i am grateful for all of them because they've made me into who i am now. all of the things i've dreaded about having a bag, i have chosen to accept. i had deep fears and doubts about feeling unattractive and being afraid to date or anything like that. those are all things i have surrendered and let go of.

but here's the thing i REALLY know, the most important of all: i woke from that surgery and i'd never felt more alone. i felt that nobody around me could even begin to comprehend the horror i felt when i first saw my ostomy. but that's what's so amazing....the atonement is there for this exact purpose. it's not just there for when we've sinned. it's there so that we never have to be alone. we can choose to be alone, if we're stubborn or whatever else- but we never HAVE to be. Jesus suffered so that He would understand how to comfort us. maybe nobody else around me knew how afraid i was in that moment firsthand- but HE did. and so i wasn't alone.

we don't have to be alone. i wish i could convey that to every single person i know and love.

on this Easter Sunday, remember that. you don't ever have to be alone.


jenniferlaurens said...

Another wonderful insightful post.

Anonymous said...

good post, Rachel. You are always in my prayers.
Best wishes to you.