Friday, August 24, 2012

The Misadventures of an Ileostomy

So here is the deal:  Apparently the Deckers really know how to go big or go home when we get sick.  Ryan is the expert it seems with his crazy Crohn's :)  His fifth and latest surgery is the BEST and so amazingly cool and we are ready to share if you are ready to read...

Dr. B, our favorite colorectal surgeon gave Ryan what is called an Ileostomy on July 30th.  I did not know that word at ALL when it was first introduced to us, so indulge me for 10 seconds while I try to quickly and clearly explain it.

An ileostomy is an opening in your belly wall that is made during surgery.  Ileostomies are used to deliver waste out of the body and into a specially designed pouch when the colon or rectum is not working properly.  The opening where waste secretes is called the stoma; it is generally bright red, round, and about an inch or so in size.  Ileum refers to the last part of the small intestine which is where the bag connects to the stoma.  Crystal clear, right? 

It is insanely awesome in my opinion but honestly freaked Ryan out a bit at first, which is normal and OK!  Now he is a stud with it.  With an Ileostomy, his colon is simply being bypassed though the large intestine tissue remains alive and simply "goes to sleep" while it's not being used.  So that he can still use the bathroom we apply a two piece medical supply to it that let him function normally.  There is an appliance that fits directly to over the stoma and to the abdominal skin and then you clip on a pouch or bag.  You simply drain it from a re-closeable opening at the bottom as needed and it is very hygienic!  We change his ileostomy appliance and bag every 3-5 days.  The dang medical industry is so legit!  This pouch set looks very much like what Ryan wears 24 hours a day:

An Ileostomy is not gross, noticeable, smelly, limiting, or weird.  It had given Ryan life, taken away the pain of bowel movements, he will be able to resume ALL normal activities (even swimming), and it is a fabulous invention.  Truth be told, if this kind of medical therapy was not available and we lived about 100 years ago Ryan probably would not be thriving or even living because of infection or some other complication of his VERY severe Crohn's Disease.

This picture below is NOT Ryan but is an excellent resource for more information if you would like to read about ostomies and this patient's journey.  This is an excellent, non-graphic, and real-life picture of a healthy stoma and looks nearly identical to Ryan's when there is no bag attached:

What you should know about my particular Ostomate (Ryan calls himself a Osto-stud):
1. Refrain from jokes unless given permission.  It will not be funny, I promise.
2. Act normally with him: hug him, touch him, love him!
3. Ask questions.  We are very open and if you're lucky Ryan will probably flash you his pouch :)
4. Share your own experience or talk about people you know with ostomies.
5.  This is a journey for us too so we are learning about what he can/cannot do just yet
6. Sometimes Ryan is sensitive about it, sometimes he is confident about it.  We just ask for grace.
7. His diet is only restrictive from hard, sharp, or highly fibrous foods
8.  He is the same, amazing Ryan Decker...just with a new, fancy appendage!

Do you have any questions?  We would love to hear them!  I tried to pick out non-graphic pictures but I'm not sure if these images clearly explain the procedure.  There is so much more to an Ilesotomy than when I can write here but to keep it (fairly) short, this is a good starter point.  Thanks for letting us share with you and we look forward to sharing more of the journey together!


  1. What an amazing couple you guys are. And what an incredible surgery and invention! I myself have been a huge benefactor from modern medicine as well and I know how grateful you must be feeling.

    Thanks for sharing something so intimate. We are proud of Ryan's infinite courage.

    Let the healing continue!

    1. Yes Diana!!! We love modern medicine now and are embracing it as necessary. An ileostomy is such a God-send and you're right, my husband is the most courageous!

  2. This is absolutely amazing. So blessed with what the medical field can do. Ryan is definitely a Osto-Stud! Thanks for all the education and sharing your journey.

    1. You are probably more educated than all of us mom! We're glad to share about the ileostomy now that Ryan is more comfortable and we realize how much support is needed in this very tiny minority of young people who have them. Your son-in-law is a stud of al kinds!

  3. Modern medicine really impressed me today. Where abouts are you guys from?

    1. Vee we're in small-ish town called Golden. It's a mountain-y place with an outdoor lifestyle but still just 20 minutes from Denver! Ileostomies really are so impressive along with all the other help Ryan had received: surgeries, cetons, drugs, nutritional therapy, etc etc etc



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