St. Louis Take Steps

;'s

As many of you know this past year was a tough chapter in my battle with Crohn's.  While I am at a better place than I thought I would be I am still dealing with things because there is no cure for this disease. Here is a bit of what my life has been like for the past several months I hope that when you read it you realize the need to raise funds and find a cure not just for me but the over 3.1 million others suffering along with me.  

 

Two weeks from today, November 4th, I am having my 8th surgery. From previous surgeries I have narrowing's or "strictures" that tighten and cause my small bowel to not pass food through (very uncomfortable). For 7 years I have had 3-5 "stretch" colonoscopy's each and every year where they open those strictures with a balloon. Through the help of my amazing wife Erin and Dr. Deborah Carlin, Eddie Weller, and others, I have been able to kick the can down the road and keep stretching when things got bad and have been much improved with their guidance. Their work and efforts towards my cause can't be understated. I've tried every remedy possible, but too much of the damage had already been done, and this last "kick the can" effort hit a wall and I'm forced to make a decision. I have as many as 7 strictures that need attention. A "stricturoplasty" is desired where they can reconstruct the tightened areas and fix the issue to hopefully have an improved quality of life. I've had Crohn’s for 21 years and have NEVER been in remission, so the thought of learning what it’s like to actually feel good sounds unreal. However, there are countless other possible outcomes that are far less favorable. They may have to remove everything damaged, and I will get my nutrients from an IV bag for 9 hours every night, food won't provide enough nutrients. I could wake up to an ostomy Chabag, or they may re-route my intestines to go around strictures, they just won't know until they get there. The surgery is "to important and risky" to do at the new state of the art Barnes West, so I will be a BIG BARNES with the head of the colorectal surgery team, the top of the top docs who I'm blessed to have access to, as he only deals with the most complex cases, which is me. Not to many get to this point, so while the procedure itself isn't really new, they are not done very often, maybe 20 times in his career. The recovery time is 5-7 days in the hospital, and 5-6 weeks at home, home healthcare nurse, the whole bit. The last 5-7 day window I received, it was 31 days, 24 days, and then 12 days, with at least 2-3 corrective emergency surgeries while I was already admitted. Suffice to say, its a very complex procedure and there are lots of unknows, and my history has been closely tied to Murphy's Law, as something always happens.

 

I'm nervous, have had PTSD from my previous experiences (literally almost died twice), but am giving this all to God. With 1 visitor per day and nobody staying the night, its down to God and the nurses to see me through. I'll take those odds, and pray that God continues to protect me, as I'm already a living breathing miracle just to be able to be here today. He has a plan for me, but I know that involves me still being here to complete it. That said, its scary to see the path ahead that you know is coming, and see only 1 set of footprints in the sand, knowing that only God will be able to carry you through this. I've been there before, and I've battled back, but each time seems to get a little harder. Now with a family of 6 to support, I'm going to rely on God now more than ever.

 

I'm writing to let those who fight these battles know that they are not alone. I'm writing to let them know what's possible on the other side of adversity like this, and to trust God and HIS plan in the process. I'm writing to give others hope, be an example of how to persevere and motivate others to fight the battles with their head held high, and rely on God and His truth, for only He is in control.

 

I appreciate your prayers and words of encouragement as I walk this path. I hope you all reflect on your own path, how we are all blessed, and that you will never make it over the insurmountable mountain of troubles if you don't have the courage to take the first step forward and accept your challenge head on. Make today amazing. I'll keep you posted

 
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