Our Crohn's Journey

  Crohn's has torn our world apart and opened our eyes to God's grace anew.  Here's our story:

December 2012-feeling and looking better

We were 23 & 25, married for less than 2 years, when Crohn's Disease hit our lives in early 2012.  We were both extremely active and healthy.  Just a week before his symptoms began Ryan was easily running over 11 miles as he trained for a half marathon.  

But everything came crashing down in March 2012.

His first symptoms came after a rather rough exam at a routine hemorrhoid check-up.  We were alarmed by his bloody stools and pain, but nothing we thought wouldn't disappear in a few days.  We were very wrong.   Ryan's symptoms progressed into what would be later diagnosed as severe Crohn's Disease.  The disease presented itself with two large anal fissures, abdominal cramping, bloody bowel movements, fatigue, and steady weight loss.  Just a few weeks later Ryan was unable to stand, sit, work, or do much of anything.  His symptoms had progressed to night sweats, fevers, unrelenting muscle spasms in his anal sphincter, and unfortunately more weight loss.  

 After weeks of suffering in May 2012, Ryan was prescribed a corticosteroid which would treat the Crohn's, a muscle relaxer, anti-nausea pills, and several strong rounds of antibiotics.

At first these medicines worked but not for long.  By now 3 months have passed and Ryan's ebbs and flows of progress are discouraging to say the least.  By June 2012 Ryan who stands at 6'1" weighed 151 lbs, down from 185 lbs.  He was experiencing the worst symptoms we could have imagined.  More aggressive and higher grade fevers, increased pain, dehydration and a general inability to do anything besides sleep and force down food.

Our surgeon at the time, Dr. W, finally suspected an abscess (a internal pocket full of pus and infection) which would account for many of his symptoms.  On June 8th, the day before his 26th birthday, Ryan went in for surgery #1.  Dr. W found 2 large abscesses and one semi-formed fistula (an abnormal connection between tissues).  She left a large penny sized hole in his upper thigh to allow all the infection to drain.  We saw immediate progress!  Praise God!  Around the same time our current GI doc, Dr. L, saw it necessary to put Ryan on a 2 month prescription of antibiotics to kill bad bacteria that might be promoting this flare up.

But not even 3 weeks later, we found ourselves right back in our surgeon's office with Ryan complaining of the exact same ailments.  So we headed back in for surgery #2 on June 28.  Dr. W found more infection and a fully formed fistula that would explain the very painful area in Ryan's perineum.

In July 2012  Ryan's symptoms returned with no warning and no change in any of our care plan; he suddenly regressed even more.  At this point he had lost about 20% of his body weight, around 40 lbs total.  Ryan underwent surgery #3 on July 20th to drain more infection and had his 2nd CT scan July 23 which thank God came back clear.  On July 25 Ryan was immediately hospitalized during our first office appointment with to a referred colorectal surgeon, Dr. B, who was so alarmed at his condition.  Our hospital stay was 9 days.  In that time Ryan had an MRI, surgery #4 to place cetons in his fistulas, surgery #5 called an ileostomy, began intravenous nutritional therapy, received countless drugs, and was poked with too many IV's but it was SO needed.  Our release and recovery from the hosptial was terrifying and hellish.  But we were glad to be home.

We began Remicade 8/13/12, dosing transfusions in close intervals initially and eventually working to sessions every 8 weeks for life.  This therapy combined with the ileostomy seem like a strong path to meaningful recovery

 Ryan was again admitted to the hospital 10/24/12 for an ileostomy revision (surgery #6) because his stoma was retracting and prolapsing.  However other complications arose-including an intestinal blockage which resulted in surgery #7.  That hospital was excruciatingly awful with unknown twists, major setbacks, and the worst pain Ryan has known so far.  We were released 11/8/12.

Currently:  Ryan is recovering daily and doing better, though never healed.  "Better" and "healed" are not interchangeable in incurable chronic illness.  His weight is back up, he is working again full time, and we are enjoying a more restored and less rocky season of life.  Praise the Lord.

We are slowly accepting that chronic illness is a part of our story and marriage.  Sometimes it feels like we've been married 20 years, instead of just 4.  But we are in this for life.  The bond God has called us to as husband and wife means we are one flesh.  We suffer in each others heartaches and we rejoice with each others triumphs.  We will keep reaching for not only Jesus' coat fringe, but for his very heart, believing God to to show up in miraculous ways.  Please pray with us.

Ryan is getting better by the day!  Here we are in February 2013

Last updated: 04/11/2013

2 comments:

  1. Hi, I almost didn't write this. Is there anyway possible ur husband has some type of food allergy, intolerence whatever? Please don't think I'm trying to downplay our interfere. I did not have the same severity of symptoms but I totally get what ur going thru. I have a very good friend with extremely severe ulcerative colitis bordering crohns. His attacks his joints among other things and he has been dealing with it for approx 25 years. I have been dealing with mine my entire life but I have no "official" diagnosis since I don't fit perfectly in any of the diseases. About 8 years ago I gave up gluten as I figured I had nothing to lose. Within a month there was a difference and within 2 years most of my different "problems" were gone and I was off all meds. My friend finally tried the same thing and the results were drastic. Within a year the healing that has happened has astonished his doctors one if which told him to eat what he wanted.because life was to short not to enjoy his food. He eats incredible tasting food as do I. The doc would have been right about one thing though....life.us to short. His would have been cut very short a his body was finally.saying "enough." I am not trying to offend but I have found out the hard way that I found no, and I mean no, doctor that even mentioned food or diet and I saw many. Neither did any of my friends many doctors. It isn't even on their radar. They were for the most part awesome kind doctors but. Maybe this it's old news but I couldn't stop thinking I should write so I followed that whispering. I hope your husband is still doing well. I can't imagine being the one watching. That makes my heart hurt just thinking about it being my husband and watching him go thru that. I'll b.praying.

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    1. Hello!

      Thanks for your time to comment and concern. We actually did address his initial flare as a food allergy of some sort. With timing, precision, and daily logging we cut out out each of the following at separate times: gluten, dairy, meat, sugar, acidic foods, nuts, soy, and more. When none of those yielded improvement we began to more strongly suspect Crohn's disease.

      Another reason we don't suspect food allergies is because of his extensive colonoscopies and MRI scan results. Each showed severe ulcerations, scarring, bleeding, fissures, fistulas, and narrowng of his lower GI tract. Those usually aren't attributed with food allergies, ya know?

      Thanks again for your input. I hope that you are experiencing FULL health!

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