Wednesday, October 19, 2011

How God Cured My Incurable Disease

“So let the water’s rise, if you want them to”

I don’t know why I haven’t written about this miracle sooner. Maybe I was waiting for confirmation from a second doctor,which I finally got on Tuesday, to squelch any questions some may have of its validity. Maybe I have been too busy to write. I don’t really know but I know it’s been in the back of my head for 9 months now. It is a story of what God has done for me. It is the ultimate miracle to date in my life and it’s been 14 years in the making. Four years ago I was diagnosed with Crohns disease and now I stand here on October 20th 2011 and proclaim that two separate doctors have looked into my digestive system and confirmed to me that they don’t see any signs of Crohn’s disease. I’m going to write in several parts where I have come from,what God has done,and what a miracle it is that I no longer live with what the secular world proclaimed to be an “incurable” disease. And of course we are going to have a little fun at my expense along the way.

14 years ago this month I got sick. Very sick. So sick the next year of my life was spent trying to figure out what the heck was going on. My symptoms were bloody and frequent diarrhea,fatigue,anemia,and fevers. Whatever it was this was rip roared into my life right at the beginning of the one of the most coveted years of a young man’s life;my senior year in high school. I had finally come into my own socially and what do you know,I started pooping blood with no control over it. Not exactly a trait the ladies were looking for. I missed a ton of school and spent a lot of time at doctor’s offices. I had no clue I was about to embark on a struggle that these words on a piece of paper could never fully explain.

About 9 months after the initial symptoms I was finally diagnosed with Ulcerative Colitis,the second most severe digestive disease possible. U.C. is inflammatory bowel disease. It is defined as inflammation of the large intestine. About 1 in 300 Americans have either Colitis or the more serious Crohn’s disease. I spent the next 5 years on high doses of the sterioid prednisone,which I know now is just as bad as the disease itself.

The drug kept me alive though,although a lot of those years I was so drugged up I almost felt comatose. I was not myself. I was miserable, unhappy,and unhealthy. My hair thinned out and my face puffed up as side effects of the drugs. I was told I was going to lose my hips if I didn’t get off of prednisone,and I was only 21 years old.

When I was at my sickest I couldn’t even keep my head up over my shoulders. I was so weak that I couldn’t sit up for more than a few minutes at a time. (For a miracle story God gave me from this time in my life please read this blog if you haven’t already…. joeyd5641.blogspot.com/2010/04/my-first-time-actually-seeing-god-in.html)

I also had no control over my bowels. At its worst I would have about 5 seconds between the time I first felt the urge to go,to the time I was actually going uncontrollably. Much to my chagrin there was not always a bathroom within 5 seconds of me. I would have to wear diapers when I went out during the day sometimes. I remember a time when I was at a New York Giants conference championship game and trying to decide if I wanted to wear a diaper or just risk it. I had already gone to the bathroom behind a parking lot dumster on the way to the game and didn’t want this huge game to be ruined by soiling myself. I remember deciding to wear the diaper in and telling myself, “This is awesome,you are watching your team play for the super bowl and your diaper is going to make sure you don’t miss it.” I was legitimately stoked. A 20 year old man with a diaper,his best friend, and his football team. ‘This is the life.’( I didn’t end up needing the diaper that day after all.)

But all joking aside,that was my life. Not to mention all that goes along with 10 to 20 disease driven bowel movements a day. I used to sleep all day and stay up all night because the day time was just too hard for me. I didn’t like going out during the daylight because I couldn’t inconspicuously drop a bowel movement at mine or someone else’s front tire in the sunlight. My eyes were also severely damaged by the potent amounts of steroids I was on and my eyes were so sensitive to light that I couldn’t stand it. One time a friend of mine stopped over during the day and I came out to the driveway. After I went back inside I couldn’t see a thing. I realized my eyes hadn’t seen daylight in so long that they were struggling to adjust from dark to light to dark again and I was just seeing darkness now. It went away after a few minutes but it was really a wake up call to how indisposed my body was.

In all these years I had no relationship with Jesus. I didn’t really care to. Perhaps I was mad at him. I really don’t remember. I was rude to my family and distant from my friends. I lived as a shell of myself. The disease and the drugs had worn me down and I had withered away to about 130 pounds at 6 foot 2. Looking back I probably should have died at some point,had it not been against God’s plan for my life.

I spent many a night in the hospital getting fluids or being examined. I was also a guinea pig to a new drug,being the first person in Rochester to receive Remicade for bowel disease. I had such a bad reaction to that drug that I ended up with a 107 degree temperature and rising before I finally got admitted into the intensive care unit of the old Genesee Hospital . I am convinced that without God’s supernatural touch,I die that night. I can’t tell you what it felt like,but it was bad and I don’t know how much worse it could have feasibly gotten before death would have occurred.

At some point in 2001,I went to a free clinic for osteoporis screening and waited in a long line with all elderly folks. After about 10 minutes I literally couldn’t stand anymore and bowed out of the line as all the people 50 to 60 years older than me stood there fine. It was that day that I knew I had to do something to regain my life.

On Christmas Eve of 2001 my mother and I went to a surgeon and decided I would have my diseased intestine removed. It would be a 2 surgery ordeal. The first,removal of the large intestine and the rectum, with construction of a J-pouch. The J Pouch would be my small intestine folded on itself and would serve as my new digestive system. I would be required to have an ileostomy bag for six months while my system healed. An ileostomy is when your small intestine is pulled thru your stomach and protrudes on the outside of your body,and excretes feces into an attached bag that hangs down.

Now the prospects of a bag were intimidating but we knew it was the only chance I would ever gain some semblance of a life. The surgery was a beast and a bear all rolled into one. On April 2 nd ,2002 I woke up with a foot long incision on my stomach,a poop bag hanging off of it, and the worst pain I have ever experienced. When my loved ones looked at the wound I could tell it must have been awful because tears welled up in their eyes. The doctors told me they had never seen a colon so diseased as mine. It was going to be a long road to recovery. But the good news was as my disease was defined as confined to the large intestine,now that I had removed it,I was disease free.

The ileostomy bag was a challenge. Some nights I would roll over on it while I slept and,what do you know?Pop goes the fecal. I did try to make the most of it though. I was open about having it and once placed it on a co-workers forearm and asked him “is this yours?”,before he ran into the bathroom and hid for about a half hour. I also wore it on the outside of my pants at a Chinese restaurant,much to the horror of my eating companion,Dan Wallace. I had to make the most of it and make fun of myself. After all how else do you deal with defecating thru your stomach skin?

In September of 2002 I had surgery 2. They took away the bag and I would be able to go the normal way again. They said to expect it to start with about 10 to 15 movements a day and to go down to about 3 to 5. I was excited that I was disease free and ready to get off the Prednisone (it took me a year to wean off the monster). I was ready to embark on my new life. The only problem was….. I never got better.

I had problems with the new pouch from the get go. I was going non stop and couldn’t properly evacuate. The only difference between this and colitis was I did have control over my bowels,so no diapers needed. But something was still wrong. I spent the next 5 years just living with it. I was tired of doctors and just wanted to live my life as well as I could. In May of 2007 however it was very bad and I decided to go to get a colonoscopy. The doctor discovered I was in the 1 percent who was misdiagnosed and I actually had the most serious digestive disease known to man;Crohn’s Disease.

The day I was diagnosed with Crohn’s,I played in a softball game. I hit a ball harder and further than I ever remember hitting it,for a homerun. This ball went on a straight line over the center fielders head by about 50 feet. I was not and had never been a power hitter. My mom commented that it was God giving me a blessing on such a hard day. I didn’t see it as such then,but looking back it just wasn’t in my power to hit a ball like that and I am sure it was God up to bat for me. It was so symbolic of what the next 5 years of my life was going to be like.

I had ignored God during the duration of the past disease (Colitis) and I would ignore him for the first portions of this more serious disease. But there was going to come a day where looking to him was going to lead to my deliverance. He knew what was going to happen,and that out of body homerun was just the start of the miracle of my healing from a disease I was just diagnosed with that morning.

Part 2 coming later this month. Thanks for reading!

47 comments:

Ashley @ Wishes and Dishes said...

first comment! bam! Nicely written...

Melissa said...

So happy to be marrying someone who never gave in to be overtaken by a disease, but instead, believed God could overcome it.

Melissa said...

I meant to say "being overtaken".

Sheryl Phillips said...

Very powerful, but I can't believe you are leaving us hanging here. Hurry up with part 2!

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