getting used to a shit bag

Home for a couple of days now.  Such a relief after the hospital.  Good naps with putney.  Actually going outside (though it’s been raining since I got home).  The option for real food.  And uninterrupted time with my wife who is some sort of saint or maybe angel to be taking all this on with the level of grace that she is.

The big news, however, is that the ostomy has finally started working.  And how!  Gross.  Important to call it what it is, I think, and what it is is Yucky.  The nice thing about shitting the normal way is that there’s sort of a beginning and an end to it.  Sure..  maybe you’ll have to come back in a while and do a little more, but you can decide “that’s enough, think I’ll wipe, pull up my pants, and go do something else for a bit.”  Without a sphincter, it just sorta keeps coming.. on it’s own schedule.  The last couple of nights, I’ve gone to bed with a bag attached to me with shit already in it, knowing that putting a fresh one on would be silly.  Imagine cleaning up after your dog, and then tying that plastic bag to your belt loop and hanging out with it for the rest of the day..  or over night..   Right.  Yucky.

It doesn’t help that the particular sludge coming out of me at the moment is something from HELL with a stench unlike anything I’ve ever smelled.  The product of a drugged, hospitalized, constipated, wincing body.

I’ve been told that as I settle in and my bowel rhythms fall into line, that I’ll be able to irrigate once a day and empty out a good portion of the bowel, and then simply tape a piece of gauze over the thing and cross my fingers..  That would certainly be preferable. I don’t doubt that I’ll get there.

Yesterday, I had coffee and waited a while..  when I was fairly certain that my bowels had done what they were going to, I took the whole set up apart, took a shower, and started entirely fresh.  I put on some clean clothes. I felt pretty decent.  Went off to the doctor for a follow up.  He felt that things were looking great, and even took out all the staples..  He replaced them with Garfield band-aids, and said that it was very important to keep a sense of humor.  In what felt like a pretty offhand way he told us that he had removed quite a tumor.  Two inches long and through the wall of the rectum.  It is mildly confusing to me how this thing went from scar tissue spotted on an MRI that was “consistent” with the sort of surgery I had a few years ago, to an ulcer/lesion that might be treated with a suppository, to something of unknown dimension with viable cancer cells, finally to a REAL BIG BOY TUMOR with involved nodes.  It is not as though I haven’t been under pretty close scrutiny.  It would be pretty easy to jump to the conclusion that the docs had REALLY missed something.  I don’t think that’s it exactly.  It may be that there was a little undue optimism on their part, that made them believe they were seeing scar tissue..  I don’t know.  In the end we found it.  My surgeon told us that the good news was that it was completely removed (along with my continence), that the nodes were all local to the tumor, and not spread far and wide, and that I was young and otherwise healthy and would be able to stand outrageous doses of chemotherapy (oh boy!).

We left the doc, and I decided that I would venture on with Hill into the world and see how it felt.  We jumped on a subway and headed down town.  I thought maybe I’d go look for suspenders (my new uniform..  pictures soon.. and perhaps a dedicated post!), or stop in on the new location of a pool hall that I once lived at long before Hillary or any of you knew me!, or maybe go to the camera store to fondle a camera that I’ve been considering as some sort of retail therapy type purchase.  By the time we got to union square, though, I was SO tired, and SO uncomfortable, and it was raining SO hard that it was clear I should probably go home and get horizontal.  Oh well.  It was worth the try.  Each time now that I’ve been in the position to experience it, I’ve been shocked at the amount of energy it takes to heal.  I guess when you think of what your body is having to actually DO it’s not shocking at all!  Still the experience is strange.

“I’m feeling well, the pain is under control, I have ambitious plans, I want to see the WORLD!!  I think I’ll just lay down for a minute.”

Thank you all for your emails and comments.  I’ve been lousy at responding, but in my defense, there’s been a LOT of it.  Please don’t think you’re being ignored.  It is an incredible comfort to me to read you all.  Keep it coming.

38 Replies to “getting used to a shit bag”

  1. Ah Ez it’s so awful that this continues to be an issue and lack anything but a distant intangible wait and see but your pragmatism in the face of absolute adversity is inspirational and truly humbling. Even if I am half the world away most of the year you, Hill et al. are always close to me – even more so with my latest fumbling, thought fiddler that is my necklace from Edji.

  2. Man that scar’s huuuuge. I hope you’re still thinking of a crazy tattoo.. just maybe after you have a bit more energy.

    The term “old soul” annoys me, but it’s still a great way to describe Hill. One of the only people i know that is as strong as you is her. Hell, maybe stronger. You’re a lucky dude.

    Rest up!

  3. Ezra, you’re going through so much in such a heroic brave way, and are honestly sharing it which we completely appreciate. Don’t apologize for not responding as much as you think you should. And please take the time to recuperate and rest properly. You’re a very good person going through very bad things. What an amazing inspiration and teacher you are. I’ve been following you for awhile on flickr and now here and I continue to be impressed with your great talent and character. Continued thanks for sharing in such an honest and real way. Best wishes to you always.

  4. ezra,
    rest is good and so is moving. Retail therapy sounds like a perfectly reasonable plan.

    On the subject of suspenders I’d like to chime in, though.
    After my trivial (in contrast) surgery last year I’ve found that my scar does not enjoy an enormous amount of pressure like a belt will provide and so I’ve transitioned to wearing suspenders, often. However, the normal 4-clasp/button suspenders will poke in uncomfortable ways at the front and I’m not certain but they may block your bag.

    May I recommend the two-clasp side-suspenders. They look a lot like a holster but they hold your pants up well and they shouldn’t get in the way of the bag at all.

    duluth trading company has quite the assortment. Take a look.

    I’m glad you’re up and about and I hope to see progress on a book before too long.


  5. Hi Ezra,
    You are a superhero!
    I discovered your blog yesterday and was so consumed at reading it I was late picking up my kids from school. I am in awe of your resilience and humour. I am in awe of your ability to describe the details of your experience.
    Rock on!

  6. Hi Ezra- this is coming from a casual flickr contact who has been enjoying your photos since before this whole thing happened.. The strength you’ve maintained through all of this is nothing short of incredible. I can’t help but think that you are inspiring to so many people, no matter what life throws at you, you continue to rise above it and it’s really just amazing.

    You, Hillary and Putney are gorgeous, amazing beings and through all of this you’ve only become more beautiful. Thank you for sharing all of it, the touching moments, the disgusting details.. I love that through your photos we are seeing things as close to your reality as we can get via the internet. You are indeed a superhero:)


  7. wow beautiful! and hill is an angel. so is putney. i am sure of it. and what a crazy new way to take a dump. thanks for putting it out there, as i had no idea how all this was going to work. can’t wait to see your suspenders uniform. you are fantastic in every way. now go lay down and rest heal up. taking the subway around in the rain, for heavens sake. xo

  8. Flickr contact here. Wish you the best man, and is so good to have a girl that loves you next to you, hope you can go back to your regular routine soon.

    All the best.

  9. More love! More mojo!

    I love your flickr, I love your writing, I love how strong you are, I love that the weather in New York is beautiful beyond beautiful today and maybe you can go outside.

    My thoughts are with you.

  10. Stayin’ strong and relentless. That’s the Ezra we know and love.

    I’m unashamedly fascinated with this colostomy bidness. On a medical level, it’s amazing that you can reroute it.

    Rest up, heal up fast (boy).

  11. Best Wishes to both you and Hillary. Maybe they should start making ostomy bags with Garfield on them… perhaps that can be a side project. Velo themed ostomy bags 😉

  12. hey, we are scar-twins! exept that I don’t have this bag and had a different history, a different disease – but he huge scar is the same. I wear it with pride, like a veteran. I survived, that someone rearranged my bowel and that’s quite good, I think.
    I assume that you are going to wear it with pride, too. (and I have no clue, if “wear” is the right verb in this context…)
    anyway: more mojo across the ocean!

  13. Keep on walking and NAPS are one of the greatest gifts. Its good to hear ya cracking wise and figuring out what it takes. Hill has always been surprising in her character. That is one of the many things, that make her great. You deserve someone that Awesome. Your a lucky (preparation, meets opportunity), Man!

    Don’t you worry your pretty little head about responding to emails, posts and what not. The point is that you know that we all care for you. You touch peoples life by just being. That’s it Man.

    Just Being!

    Now give that big ole’ dog a hug for me.

  14. tenacious e. i imagine it will be awhile before you want to deal with the mango. she is, as you might expect, itching for some ezra. let us know when you’re ready. in the meantime, just buzz if if you want to use the roof for photos.

  15. The pool hall moved? Where to?

    I think taking up photography or the filming you were doing a while back would be a great next project. You have a fantastic eye and rare creativity. Much love and blessings to you.

  16. The pool hall moved? Where to?

    I think taking up photography or the filming you were doing a while back would be a great next project. You have a fantastic eye and rare creativity. Much love and blessings to you.

  17. retail therapy may be a good idea. I am far from an expert, but I got the impression from my Mom’s tumour that these things can grow suddenly at an enormous rate. A positive note from her story. She was diagnosed with bone cancer when she was a young woman (she was born in 1916) and they used a new therapy with her, a radium pack. I remember seeing this enormous scar on her shoulder in the summer when she had on a bathing suit. She was cured. The C returned in the last year of her life. She missed her 80th birthday by three days. So go for the camera you’re going to have lots of photography ahead of you. Be as well as you can, I hope the fun in everyday stuff keeps on rising.

  18. i am certain of one thing, you will keep a sense of humour about your experience and you will be able to show us a glimpse of what allows all of us to get through hardships and loss.

    i dont know you personally and we have never met, but i can say i wish you warm love and restful sleep………..oh, and good meals.


  19. You must have really been itching to get out to brave the NYC subway in the rain! I love the bandaids, although they don’t look like they are doing much to keep that all together. Mahdia could bring you some fun ones–cowboys, ham and eggs, hello kitty. She is a collector of sorts You are so right about what your body is trying to do, let alone all the new pathways kickstarted in your brain as it learns to how to make your body do new things. Thinking of you.

  20. You are incredible! When this period of time is past, I seriously hope you will convert your thoughts, experiences, and feelings expressed in this blog into a book. It will be an incredible inspiration to others – as this blog is. May God continue to bless you and Hill, and yes, I’m gonna vote for the angel designation for her!

  21. I agree with all of the above. I admire the way you use the energy you have on the stuff that matters. Wish you well.

  22. I took care of my husband’s grandpa after he ruptured his colon and had to have a colostomy for a while. I packed and dressed the wound and my husband emptied the poo bag. He said it was amazing how stinky that was! I bet you’re right though – it will get better when your body gets back to normal food, less drugs and more normal activity. It’s amazing how fast you’re healing! Keep it up, Ezra!

  23. That dear Ezra, is a fucking scar… whew. I may have to show Kira this pic as she is obsessed with both scars and Garfield. I can just imagine her reaction. Glad you are getting up and about but able to go back to your bed with your fam after the (for the moment) small ventures out. Rest well and heal well… Love to you.

  24. Hey Ez,
    Has anyone suggested a Phoenix belt yet? It’s kind of like a big ace bandage with a pocket for your poobag- it holds it a little more snug to your stomach and out of the way of clothes and generally makes it less of a bother. (My boyfriend had to have a temporary ileostomy while healing from uc surgery, and it made a big difference in comfort level for both of us while we were getting used to the new yucky reality-though what you’re getting rid of is prob all that post-surgery back up, it gets better-promise!)
    Also- if suspenders get in the way, maybe its time to throw in the fashion towel and start wearing overalls?

  25. We don’t write expecting an answer from you, we hope to give you all the encouragement and energy as we can, because we want to see you strong and healthy, jumping with Putney as soon as possible! So please don’t apologize for these things, knowing that we contribute to your recovery, at least a small part, is already a great gift for us!!!
    To share this part of your life with this natural and courage, is really a gesture that makes you unique (you’re a hero, you know), I want to keep encouraging you, I wish you have, every day more health, and be, step by step, you get to the goal. Many, many, many hugs.

  26. a good update. I wish you continued improvement and good luck! and I hope you find some regularity at some point soon–we don’t want you to start a website called, do we?
    take care!

  27. I am so glad you are home – its the best place to heal. And yes, healing takes lots of energy on many levels. As always, you are in our family prayers.

    j, r, s & z

  28. Yeah, your continued efforts to ignore us is pretty damn SHITTY if I do say so myself. We’re not going to go away, just so you know. Like a dingleberry that just won’t drop.

    Love the bandaids. 🙂 Wishing you soft beds and cool sheets…

  29. To heal is a hazardous process my friend, but scars are the map of our lives, the pathways we have chosen and the ones we have been forced to take; but in the end are the testimonial of our courage and in some months you will remember all of this experience, and touch the scars in your body and tell to the world full of healthy pride. I’m still here, I won.

    My best wishes as ever, some of us have different medical conditions but your courage teach us a lot about the life.

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