Thursday , April 18 2024

My Crohn’s Story

My story as of November 6th, 2017.

I want to start by saying how I wouldn’t have been able to get this far without my amazing wife Heather and the continuous support from all of my family.  I feel extremely fortunate to have the support system I do.

After a long struggle of not knowing what was wrong with myself I was “officially” diagnosed with Crohn’s disease on January 26th, 2004.  Since then I have tried just about every medication out there to help control it with limited success and when there was success I would eventually either have a bad reaction or it would just stop working.  This has resulted in more surgeries than I can now remember but certainly the scars to prove it.  

With no options and too much Crohn’s diseased tissue, I did eventually have to have my whole colon removed and an ileostomy on the lower right side of my stomach.  Thankfully with working at a hospital and being in the I.T. field I had been able to work full time throughout the years up until 2015. 

No longer working at a hospital but instead working a different I.T. position for a few years I kept getting more and more sick again.  I finally had to have surgery on February 24th, 2015 to remove yet some more small bowel.  The surgery went well but everything after did not.  I ended up with a postop infection and abscess.  Along with all of that I was bleeding so much I had to be taken by whambulance from my local hospital to Mayo Clinic.  Mayo gave me blood transfusions and got me back on my feet and discharged me.  A few days later I need 4 more blood transfusions from my local hospital. At this point I thought I finally had a handle on everything and I am on my way to recovery.  That is when I had to go to the Emergecny Room as I just couldn’t get this pain in my chest to go away and it hurt so bad when I layed down that I could only sit or stand.  It ended up being multiple bilateral pulmonary emboli, aka blood clots in both lungs and a part of my left lung is dead due to blood clots blocking the flow.  Of everything I have been through the blood clots have scared me the most.

Dealing with all of that was my 2015.  Early 2016 as I am healing and trying to recover my employer informed me they were eliminating my position.  Thankfully I had long term disability insurance.  It took some time to clear the elimination period but now I at least have a monthly income while dealing with my Crohn’s Disease and hopefully heal enough to return to some form of work.

I had another surgery December 19th, 2016 at Mayo Clinic.  Some more bowel resection and exploratory surgery to see if they can figure out why I am having so much pain in my lower left abdomen. Of course not everything went perfect with some continued complications through 2017. The main complication from surgery is a hernia directly below my stoma. Throw in the occasional kidney stone and it made for a painful 2017 so far. 

I saw the GI doctor and surgeon at Mayo on November 6th, 2017.  The surgeon wants to insert some mesh bewteen the abdominal wall, stoma and surgeon.  I am going to wait a couple months or possibly longer to see how things go before another surgery.

If you actually read all of that and made it this far, I thank you for taking the time out of your day to read my story.