Monday, May 18, 2015

Happy Weekend & A Ryan Update

Important things first:  Ryan Decker.

If you don't like ostomies, or stomas, or inconvenient medical realities...then you should probably stop reading here. 

 Otherwise proceed:

So there is this...


(To clarify, this is what an ileostomy looks like without an appliance and bag, just the amazing intestine sewn to the skin!  How insane, right?!)

This, good readers, has been my husband's reality for the last 10 months.  

Red, burned, inflamed, eroding, rashy, itchy, miserable, raw skin.  THIS is why we are pursuing an ostomy reversal right now.

  We don't know why his skin has lost its mind lately.  You would be the 134th person so ask if we have switched appliances, rings, powders, sprays, products, tried new medical companies, used steroids, try antibiotics.  No, it's not a yeast infection, a pressure ulcer, a food allergy, or eczema.  Yes, we have tried everything from betamethasone cream to zinc oxide, cool water rinses to benadryl cream.  

Four ostomy nurses, 1 dermatologist, 1 GI surgeon have all looked at this and been stumped.

One nurse took even took Ryan's skin issues to a local conference and presented the problem to another room full of wound/ostomy nurses...and ultimately no one knows why his skin is flipping out and getting worse.  It's not systemic, it's just around his ostomy.

So, why show this private image that isn't all that pretty or pro-ostomy?

Because ostomy life is not convenient AT ALL sometimes.  It's highly inconvenient when it's acting up to be quite blunt.  The amount of time we have spent changing Ryan, he has spent itching and miserable, doctor's appointments, nurses appointments, Internet searches, and advice sought has been fruitless and seemingly endless.  

He puts on a brave face throughout the day and when we go somewhere, but this is utterly miserable for him.  He can't keep living with his ostomy running his life (our life!) so we are hot on the trail of a reversal because it is our last and best option.

And we are pumped!  No pity parties here, just hope and relief for at least a shot at something different.

So we met with our surgeon last week.  Ultimately he is encouraging and willing to proceed with ostomy reversal surgery BUT we have to get a few things done first.  Ryan needs to have a colonoscopy to stage his Crohn's even more completely and make absolute sure there are no strictures or areas of stenosis in his large bowel.

If you hook his intestines back up with poop trying to flow through his large intestine and there is a severe narrowing, well, he would just be back in the OR to get an ostomy put back up.  No good.

He also needs to get an MR Enteropgraphy, high resolution magnetic imaging of his entire GI system, to check for Crohn's else where and again, other unknown areas of stricture or inflammation.  
We are doing our very best to work with two physician schedules, two medical offices, a ton of assistants/receptionists, Ryan's work, my school, and so many more details to get these procedures scheduled in a timely manner so we can get Ryan to the OR pretty much as soon as possible.  

We are really hopeful for this surgery and really, really hopeful that he doesn't have to live with that ugly reality that is his skin anymore.  Pray with us!

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight
Proverbs 3:5-6

If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you
James 1:5

Well besides that big piece of news here are just a few pictures from our week:

I had an afternoon at home so I made a healthy snack, grabbed my new book, When Crickets Cry (HIGHLY recommend it!), and sat on the back porch.


The chickens roamed about while I read the the doodles watched them very intently and suspiciously


Speaking of doodles, these two crashed on the couch after their morning walk and stayed there for several hours.  Bums.


And I just thought this picture was funny :)  My sweet husband looking so good trying to help get my 24 week pregnancy picture right


We went to a cake tasting on Saturday morning for my baby shower. There is a fantastic cake shop in Arvada called Das Meyer that makes the most intricate, delicious cakes and pastries.  We all went to decide on a baby shower cake design and flavor.

It will be SO yummy!

Linny and Ryan enjoying every flavor imaginable

Ryan, myself, and my mom after we thoroughly enjoyed every flavor from Triple White to Lemon Poppyseed with fresh raspberry filling

More updates to come when we have them and please, please pray for Ryan, his skin, this potential surgery, and our decision making.  Gracias you wonderful people!

The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.”
Zephaniah 3:17

4 comments:

  1. I'm stumped myself. Antonio's skin has never looked like that when it was irritated. I'm praying for a successful reversal and an easy transition from the ileostomy and that the Crohn's is controlled as much as Crohn's can be! I'm grateful you have so much family to help you two in the future!

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    Replies
    1. I know, Silvia! It's so frustrating. I know you two have so much experience also. They just can't figure it out and we let him suffer way too long. We are so hopeful for a smooth, uneventful, and medically perfect ostomy reversal. We will pray!!

      Both of our families are way too good to us plus dozens of friends-we are set up and blessed :)

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    2. I will keep him in prayer. I suffer from terrible eczema and know how frustrating it is to have itchy, inflamed, burning skin that can't be tamed! Can feel like a living hell at times :/
      Praying for u guys! And BTW u look beautiful in ur pregnancy

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    3. Thanks Vee! You understand more than most!

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