Kyle Soenen

First post: Aug 24, 2017 Latest post: Aug 29, 2017
Kyle's story.
As the years have passed, it is harder and harder to remember how Kyle's journey of crohns all started, so I (Jill) decided to start this site WITHOUT Kyle's permission :) to try and sort out how and when this all came to surface.  If this bores you, no shame!  I don't expect anyone to want to know all details, but it will be easier for us to have all of this info in one long journal that is ongoing!! We started his journey at Mayo Clinic today August 24, 2017, so the following is everything VERY condensed down to date.  Here it goes:
3rd/4th grade:  appendectomy-done due to stomach pain, was not burst but inflamed so they removed it without complication.
5th grade:  Kyle's first memory of stomach pains/ diarrhea, which resulted in cindy taking him to drs , all resulting in diagnosing him with "anxiety".
17ish years old:  diagnosed with acid reflux and put on meds for this.
Continued stomach issues, pain, diarrhea consistently through all these years......
April 2, 2013:  Saw Dr. Doolittle in algona for extreme stomach pain, was diagnosed with diverticulitis and treated with medication and sent home.
May 9, 2013:  Laproscipic surgery performed after meds failed to treat the diverticulitis.  Surgery was to remove the small corner of diseased colon(area where appendix was removed years prior).  Hospitalized for what was supposed to be 24 hours of observation post op.
May 11, 2013:  still hospitalized and spiked a fever just over 105.  Was determined he was septic(his laparoscopic surgery site opened up internally)  and took him into surgery again.  Cut him open from rib cage down his entire stomach, opening his entire abdomen, cleaning it all out and removing 13 inches of diseased colon.  
May 22, 2013:  after spending 13 days in the hospital he was released!  Not before acquiring c-dif, e-coli in incision site, pneumonia, and other complications.  Recovered at home with several visits to E.R. For dehydration, etc over the next weeks.
Never fully felt recovered from this time on.  Abdominal pain has been consistent since then, diarrhea has only increased and other complications along the way.
Janruary 14, 2014:  first perirectal fistula surgery. Performed by Dr. Condoleon in Algona.  After many weeks of packing the wound, a trip in an ambulance to ER for excessive bleeding, and other minor details, surgery was considered unsuccessful.  
Date unknown:  with no progress being shown in algona for ongoing symptoms kyle was taken by ambulance from humboldt ER to ft dodge where he was first introduced to Dr. Adams.  Dr Adams diagnosed him with Crohn's disease of the small intestine, colon and rectum and began treating him agressively in the hospital for 6 days and continued treatment of many drugs, including remicade infusions every 4 weeks.
Date unknown:  Dr. Adams couldnt seem to find anything that would put his rectal crohns into remission, so then came a referral to Dr rogers in Des Moines, a colorectal surgeon.
Date unknown:  started doctoring in Des Moines with Dr Rogers to treat the perianal crohns, while continuing to dr with Dr. Adams for the rest of the Crohn's disease in him(which every dr seems to consistently believe he has had since most likely 5th grade or so).  
Dates unknown:  6-8 surgeries over the course of 2ish years with Dr Rogers to attempt to properly drain 2 different active fistula sites.  All of which provided some short term relief, but no long lasting results had been made.
Dr Adams decided the end of July 2017 that he and Dr Rogers had exhausted their knowledge of Kyle's disease and decided to send a referral to Mayo Clinic, which brings us to today!  Phew!!!

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