Jazzcat-ii-V

Fellow Crohn's sufferer here. I am quite heartened to see such a gathering of "Crohnsies!" Like many Chrohn's patients I went undiagnosed, and misdiagnosed (starting at age 12) by my general practitioner for at least 5 years. My blood test showed mild anemia, and my GP just thought it was "delayed puberty". Like atrox here, I attributed my general shitty feeling to lactose intolerance.

My symptoms worsened from about age 14 to 15. I was lethargic, on the toilet pooping all the time, and severe stomach pains. My parents knew something was up, but my dumbass doctor stood by his anemia and delayed puberty "diagnosis." I started missing a lot of school, and finally a specialist from San Francisco came to my small town in Northern California to perform an Upper GI x-ray. He was the one who finally shed some light on my situation. He believed I was suffering from Crohn's Disease and wanted to have me see a pediatric specialist at UCSF medical center. Unfortunately, I wouldn't be able to get in for another month.

During this time, my condition went from worse to critical. I was a 15 year old boy weighing in at about 70lbs. I had also developed a fistula that tunneled from my large intestine to my esophogus. At this time I began vomiting feces. This is probably the hardest thing I have had to come to terms with. When shit starts coming out of the wrong end, you know something is really wrong. I don't EVER talk about this, and it is hard for me to do it now, but we're all a really weird family here right?

I had to be rushed to UCSF medical center on an emergency status. When I got there, I was 65lbs. dehydrated, malnourished, and pretty much ready to croak. Enter the Doctor that saved my life: Dr. Mel Heyman, head of pediatric gastroenterology at UCSF. And so began a week of testing, poking and prodding. After an endoscopy and colonoscopy, my doc came to the diagnosis of Crohn's.

So began my path to healing. My doc is adamantly opposed to corticosteriods because of their many complications. So, I was immediately put on "gut rest" which meant I was not to eat anything by mouth for up to a year. I was going to have a Broviac catheter tube inserted into a main artery near my heart which would become known as my "food tube" where I had a special blend of nutrients in a bag pumped into me while I slept at night. This was prescribed so there would be no food in my gut to interfere with the healing process. I was also put on medication sulfasalazine and 6MP.

This was all very shocking to my young 15 year old mind. I remember breaking down in my hospital room with my parents around me just asking, "why me, why is this happening to me?" I was about to begin a one year very strict regimen of medication which including not eating anything by mouth. As some of you can imagine, this is the weirdest thing ever to not be able to eat food. You begin to realize how EVERYTHING in society is based around food. On the plus side though, once I got home from the hospital, I spent pretty much all my time in my room playing guitar, and tinkering away on computers. You don't realize how much time you have when you don't have to stop to eat or poop.

So, after a year of this regimen, I was in great shape. I did not cheat once, on my "diet" and I had developed great willpower, I even made a list of foods I couldn't wait to eat once I had the chance. The list was long! One weird thing that happened, is that my sense of smell seemed to get a lot better after not eating food for a year. I liken this to a blind person's hearing becoming more acute because of the loss of one of the senses. I could just be weird though.

After a year, my doc performed a follow-up upper GI x-ray to check on my healing progress. Everything was going well except I had a stricture in my lower intestine that had developed due to scarring of the intestinal wall. The only way around this was to surgically remove that portion of my large intestine. Great! So, I was now going under the knife after not eating for a year.

So, I will try to wrap this up because it is getting long. Thank you to all who have stuck with me this far.

I had surgery, and approx 1/3 of my colon was removed. However, during surgery I went into anaphylactic shock (stopped breathing, cardiac arrest). They changed all my tubing to non-latex and I came back around. They attributed this to a severe latex reaction.

So, I awoke feeling as though I had been hit by a Mack truck, but my "food tube" had been removed. Hurray! I was going to be able to eat soon. After about 2 weeks recovery, I returned home, and promptly began playing EverQuest and munching on dry cereal, granola, and other "low residue" foods in order to get my gut used to food again. The first thing I ate in the hospital during recovery were some plain cheerios, and a popsicle... it was the best thing I have ever tasted.

ANYWAY, I began smoking marijuana recriationally at about age 18. My 6MP medication was starting to make me feel sluggish, and not hungry. I was reduced to a low dose of 6MP by age 20, and eventually just stopped taking it altogether and kept smoking marijuana. I am 28 now, and please to say I have been in remission completely for about 10 years. So thanks for reading Reddit! I don't get to share this very often because I don't really like to talk about it, but it felt appropriate. Happy 4/20!

tl;dr: Got really sick as teen. Diagnosed Crohn's. Started smoking marijuana at age 18 after surgery/recovery. Been in remission for 10 years. Yay!

Hey Rushad! I just discovered you this week, and you have been a marvelous source of inspiration from one fellow musician to another. I want to say thanks so much for the music man, if you can answer just one of these Qs that would be fantastic!

1. Your solo playing is very boisterous, energetic and BIG. You play with a command of your instrument, and are able to evoke so much music and emotion as a single player. What are your sources of inspiration, and how did you develop your style over the years? Any tips for practice?

2. As you know, being a musician in this currency and capitalist driven world is often difficult and hard to make ends meet -- Especially because we want to be playing music all the time. Can you provide any insight to your view or philosophy on the 'business' aspect of music? Do you book your own gigs? Cold call venues? Do you teach?

3. I admire your free spirit and seemingly boundless musical energy. I think we both view music as a magical and other-worldly force that is capable of capturing hearts and minds across the planet! How did you adopt your musical philosophy on life, and learn to quiet the negative self-critical voices in your head?

Holy awesome sauce man. Thanks so much Rushad! That's some great words: Making music and your instrument as native as walking, breathing.. the eternal quest! I'm grabbing for my guitar right now. =)

I see your hometown is Carmel. Such a beautiful place! I'm in Norcal too. Will keep a lookout for your next shows in the area man. Cheers, and take care. =D

Do you give musical instruments any type of extra care? I've heard so many horror stories about broken instruments. Makes me so paranoid to travel with my guitar. Thanks!