Check out my Story post. I'll give a short intro here:
I was diagnosed in Feb 2014 after years of "I don't think people normally feel like this, or use the bathroom this much or this urgently". My GP doctor failed to take my complaints seriously, and therefore so did I. Until things just got so bad that I decided to skip him and go straight to a specialist.
I had an endoscopy to diagnose the disease, and the GI saw inflammation, ulceration, and scar tissue. The first CT scan was in April of 2014 and showed about 8 inches of inflammation. The second CT scan was Dec 2014, and showed that nothing was getting better, after a failed experience with several meds, and a mildly successful run with Humira (got me feeling about 80% better).
Suddenly, the worst flare of my life hit. Fevers, chills, cramps, and a general "I feel like sh*t" lasted from December 2014 until April 2015. My relationship with my girlfriend was strained to the breaking point, and I thought my whole life was tumbling out of control. It was literally the worst thing that has ever happened to me in my life.
That's when the doctor finally said the word surgery. I was prepared for it after reading about it all, so I won't go into that. But this is where the story starts.
April 16th, I entered the hospital. I had lost 50 lbs. since the diagnosis. I was very fit, as I spent several years bodybuilding before the symptoms got terrible. Had I not spent years adding lean mass to my body, I would probably have needed a feeding tube or IV or something, but luckily I was in stellar health before all this, aside from anxiety issues (possibly related to the Crohn's apparently).
They put me under, and I woke up in a grog, and my dad and now ex-girlfriend were there. They told me the final prognosis:
2 feet of terminal ileum removed.
Ileocecal valve removed.
Appendix removed.
Part of cecum removed.
Apparently everything they removed had swelled and inflammed so bad that it was physically sticking together. They had to repair part of my colon that had fused to the mass. The appendix wasn't even visible as it had been engulfed.
They started with the robot for a laparoscopic surgery, but ended up cutting me down the middle in order to get the mass out. I now host 4 puncture wounds in a half moon on the left side of my body, and a gnarly 7 inch stitch from my sternum to my waistline.
The first few days in the hospital were pretty rough. I had terrible gas pains, which walking helped alleviate. It was tough to move around at first, but eventually I was walking the whole floor. The worst thing for me (embarrassing because my then-girlfriend had to witness) was when my bowels decided to start back up in the middle of the night. I tried my hardest to pull myself out of the bed, but being strapped to an IV and the effort of moving was so hard that I ended up "pooping my pants", for a lack of better description.
I discharged after 4 days, and spent the next two weeks at home unable to sleep in my bed or really do much of anything. I got sick of video games and movies quick, and reading didn't help much either. My girlfriend and I broke up the first night I got home (after a few weeks of fighting, I don't want to go into it here), so I thought about her and our relationship a lot. It was very tough to deal with heartache while trying to recover. I wouldn't wish for anyone to have to experience that.
After the first two weeks, I definitely started feeling better. Every day got easier, and I was walking around the block every other day. I didn't take the pain medication for very long, perhaps 4-5 days after arriving home, as I was afraid of becoming dependent. I think I was afraid of that just because the meds dulled the heartbreak as much as the physical pain.
After 4 weeks, I went back to work, and feel fantastic. Night and day difference for sure. All the Crohn's pain is gone, and my diet is improving rapidly. I actually am eating fruits and veggies again!
The only problem I face now is the new bowel mechanics. With a valve missing, I definitely get the "bile sh*ts". I found that immodium works well for controlling it, as well as more fiber in the diet. It's not perfect, but I'll take it over a flare any day.
So that's where I am today. Surgery so far has been an absolute life saver. I hope to get back to living a 'normal' life, even if I have to start packing extra clothes for those "I couldn't make it to a toilet fast enough" moments. After two near accidents already, I am keeping an extra pair of clothes in my car and in my desk at work. I also keep a backpack with immodium and pepto tablets, wet wipes, and other things.
I was diagnosed in Feb 2014 after years of "I don't think people normally feel like this, or use the bathroom this much or this urgently". My GP doctor failed to take my complaints seriously, and therefore so did I. Until things just got so bad that I decided to skip him and go straight to a specialist.
I had an endoscopy to diagnose the disease, and the GI saw inflammation, ulceration, and scar tissue. The first CT scan was in April of 2014 and showed about 8 inches of inflammation. The second CT scan was Dec 2014, and showed that nothing was getting better, after a failed experience with several meds, and a mildly successful run with Humira (got me feeling about 80% better).
Suddenly, the worst flare of my life hit. Fevers, chills, cramps, and a general "I feel like sh*t" lasted from December 2014 until April 2015. My relationship with my girlfriend was strained to the breaking point, and I thought my whole life was tumbling out of control. It was literally the worst thing that has ever happened to me in my life.
That's when the doctor finally said the word surgery. I was prepared for it after reading about it all, so I won't go into that. But this is where the story starts.
April 16th, I entered the hospital. I had lost 50 lbs. since the diagnosis. I was very fit, as I spent several years bodybuilding before the symptoms got terrible. Had I not spent years adding lean mass to my body, I would probably have needed a feeding tube or IV or something, but luckily I was in stellar health before all this, aside from anxiety issues (possibly related to the Crohn's apparently).
They put me under, and I woke up in a grog, and my dad and now ex-girlfriend were there. They told me the final prognosis:
2 feet of terminal ileum removed.
Ileocecal valve removed.
Appendix removed.
Part of cecum removed.
Apparently everything they removed had swelled and inflammed so bad that it was physically sticking together. They had to repair part of my colon that had fused to the mass. The appendix wasn't even visible as it had been engulfed.
They started with the robot for a laparoscopic surgery, but ended up cutting me down the middle in order to get the mass out. I now host 4 puncture wounds in a half moon on the left side of my body, and a gnarly 7 inch stitch from my sternum to my waistline.
The first few days in the hospital were pretty rough. I had terrible gas pains, which walking helped alleviate. It was tough to move around at first, but eventually I was walking the whole floor. The worst thing for me (embarrassing because my then-girlfriend had to witness) was when my bowels decided to start back up in the middle of the night. I tried my hardest to pull myself out of the bed, but being strapped to an IV and the effort of moving was so hard that I ended up "pooping my pants", for a lack of better description.
I discharged after 4 days, and spent the next two weeks at home unable to sleep in my bed or really do much of anything. I got sick of video games and movies quick, and reading didn't help much either. My girlfriend and I broke up the first night I got home (after a few weeks of fighting, I don't want to go into it here), so I thought about her and our relationship a lot. It was very tough to deal with heartache while trying to recover. I wouldn't wish for anyone to have to experience that.
After the first two weeks, I definitely started feeling better. Every day got easier, and I was walking around the block every other day. I didn't take the pain medication for very long, perhaps 4-5 days after arriving home, as I was afraid of becoming dependent. I think I was afraid of that just because the meds dulled the heartbreak as much as the physical pain.
After 4 weeks, I went back to work, and feel fantastic. Night and day difference for sure. All the Crohn's pain is gone, and my diet is improving rapidly. I actually am eating fruits and veggies again!
The only problem I face now is the new bowel mechanics. With a valve missing, I definitely get the "bile sh*ts". I found that immodium works well for controlling it, as well as more fiber in the diet. It's not perfect, but I'll take it over a flare any day.
So that's where I am today. Surgery so far has been an absolute life saver. I hope to get back to living a 'normal' life, even if I have to start packing extra clothes for those "I couldn't make it to a toilet fast enough" moments. After two near accidents already, I am keeping an extra pair of clothes in my car and in my desk at work. I also keep a backpack with immodium and pepto tablets, wet wipes, and other things.