MY JOURNEY WITH CHROHN'S DISEASE - A TIMELINE 📂

I am publishing this now in order to qualify for any draftmas or end of the year awards. @tombatten this is the one you were waiting for i think @mallofamanda this is why I didn't press forward with our podcast. I just didnt have the strength. If I did I would be listing more. @DanaDigsYou has a compelling story of autoimmune disorder as well
  1. 1995 - i went away to bible school and the cafeteria food was gross. I started having diarrhea a lot. I didn't tell anyone about it.
  2. 1996 - after returning from the break my friend remarked that it looks like i lost weight. I hadn't realized it, but i lost nearly 10 pounds from the start of the school year.
  3. 2002 - on my way to church I have to pull the car over and just manage to roll the window down before i projectile vomit out the window. Originally I blamed it on some old chicken soup my mom gave me. I throw up several more times that night and spend the next 24 hours shaking and crying from the stomach pain. I do not go to the hospital.
  4. 2003 - i begin having severe stomach pains about once or twice a year that last several hours. I do not seek medical treatment due to fear of doctors and having no insurance.
  5. 2005 - Halloween - Believing my now occasional stomach pains to be not serious I move to New York to fulfill a lifelong dream of being an actor, writer and comic
  6. 2007 - on occasion when i bite into meat i can no longer taste the flavor.
  7. 2008 - i have my first colonoscopy. The doctor is "95% certain" I have chrohn's disease" and wants to put me on treatment medication. I decline.
  8. 2010 - december 19. two hours after work i wake up to surging and intense stomach pains so severe i am unable to sleep. This pain is far worse than any i have experienced before. I do not go to the emergency room.
  9. 2010 - december 20. After a fitful and sleepless night the pain subsides a little. I discover later this is because the chrohn's disease ruptured my large intestine and the pain was caused by intense pressure on my colon walls. Pressure which having burst through is dramatically decreased. I am able to get out of bed and pee. I do not seek help.
  10. 2010 - december 21. I am supposed to be at a meeting to start a marketing company. I tell my friend over the phone I can't make it and he tells me to stop slacking. A production company calls me and asks me to be a stand in for Kiefer Sutherland. Thinking i will be fine the following day, I tell them I can make it.
  11. 2010 - december 22. I get out of bed and shamble to work, stumbling like a zombie. When i get to set they ask me if i am okay. I respond "i'll be alright" They tell me to go home. I visit a doctor who tells me i am a very brave man and asks me how i want to go to the emergency room. call a taxi or ambulance. I figure if i'm going to go down i'm
  12. Going down the right way. They call an ambulance and two burly men strap me to a chair and haul me into the night. After arriving at the hospital a tube is jammed down my nose for breathing. The jamming is unsuccessful on the first try and comes up full of blood. Hours later they operate on me. I wake up 3 days later with an ostomy bag attached to
  13. The side of my stomach where my intestines have been rerouted to allow them to heal. All my bodily waste goes into this bag which has to be changed several times a day. The operation has left me with a giant V shaped cavern. A 6 inch part of my intestines was removed. They said they could not reattach the intestines because they were so full of
  14. holes. The first thing i remember when i wake up is, its christmas day and my parents are leaving me. I begin to cry. I am on heavy narcotics. I reach for my cell phone behind me and have to rip my arm back because the pain is blinding. I have since theorized that during the six hour operation my arms were dangling around which wrenched my
  15. shoulder sockets badly. I feel no pain from my stomach any longer but constant numbing shoulder and back pain. A few days later they send me for upper and lower gi tests. I am lying naked save for a gown between two large glass plates with cameras in them to capture my insides with a tube going inside my anus, filling it up with fluid that would
  16. show up on the x-rays. My back is causing me intense pain. Additionally i have 4 drain tubes attached to me to pump out stomach fluid. The pressure from the fluid is palpable and i tell the nurse my plight. She responds that they only need a few more pictures. Eventually i cannot take anymore and the tube flies out of my anus spraying the fluid all
  17. over the walls, the glass, my gown, everywhere. The woman whom i'm beginning to suspect is Nurse Ratched hands me a new gown. I tell her i'm going to the bathroom to clean up. She says they may need a few more pictures when i get back. I spend 20 minutes in the bathroom cleaning myself and lying on the floor. When i come out she tells me that she
  18. thinks we're okay with the pictures.
  19. I spend christmas in the hospital and new years during an absolutely awesome snowstorm. Most days all they do is check the level of fluid draining out of me and tell me that they dont think i can go home yet. When i tell them i plan on going back to Virginia with my parents they are concerned. They were planning on releasing me to my studio in
  20. Astoria, Queens where i lived by myself and where i most certainly would not be able to work for several months. They would only permit me to leave the state if a doctor there would agree to see me. After a few phone calls this was arranged.
  21. 2011 - January 16. My parents, who had been back at the hospital for several days take me home with them to Seaford, Virginia. "A death of a dream" my mom says dramatically. I say nothing. I'm just glad to be out of there. After arriving home i quickly discover that all of my pain is located in my shoulder and back area and in fact i am unable to
  22. sleep in a bed for an entire month because it caused my back to spasm suddenly causing me to jolt upright out of a deep sleep. I ended up sleeping in a chair downstairs next to my dad's office for the whole month. My stomach is still an open wound and the bandage needed to be changed daily.
  23. In the weeks that follow I continue to get strange numbing pains in my shoulders and neck. The drain tubes are ripped out of my stomach with a yank and feel like a hot needle slicing through me. My would begins to heal slightly but the bandage still needs to be changed every day. I start to do it myself. Using the bathroom by emptying a bag full of
  24. Human waste into the toilet is still a very strange experience. I have to constantly clean the toilet now or I will be reminded how filthy I am. The area around the hole they have cut for what is called the illesotomy bag develops a painful infection frequently because of what are called "fistulas" - microscopic holes that waste travel through
  25. 2011 - June 15 I go to a hospital in Hampton, Virginia to get what is called a reverse ostomy and reconnect my intestines. My doctor says I needed 6 months for this process because my large intestine had so many holes and it needed time to heal.
  26. Its really strange pooping again for the first time in six months. I had gotten used to being some sort of symbiote lifeform. The stomach pain I was experiencing before is also completely gone. I convince myself that I'm okay now and ignore my doctor's advice to go on treatment drugs like Remicade or Humera. I had actually submitted paperwork and
  27. been cleared for an entire year of free Remicade but I didnt follow up this course of treatment. My mom was muscle testing me often during this time and reccomending various holistic pills based on what I tested for. My doctor tried to convince me that I could eat anything I wanted to gain the weight back that I lost during my surgery. This sounded
  28. strange but I wasnt able to commit myself to a wholesale diet makeover. I tried one called "The Makers Diet" and I flamed out spectacularly after a few weeks. I was just hungry and cranky all the time and didn't see how I could live like that.
  29. My initial medical bills for my emergency surgery and 3 week hospital stay were astronomical without insurance but I knew they were too big to worry about - either they would forget them or I would go bankrupt. So, I started writing letters. I wrote to every single doctors office and collection agency about my hospital bills which totalled
  30. approximately one hundred and eighty five thousand dollars. I asked them to forgive my debt because I was not working and could not possibly pay them off. Then one by one the letters came back qualifying me for a 100% discount (their terminology)
  31. I worked in the construction field with my dad during this time constantly being pulled back and forth by wanting to go back to nyc and people wanting me to stay in virginia. As soon as I was able I began to take the chinese bus back there for work and acting auditions on a semi-regular basis
  32. 2012 - summerish - my story of my hospital stay begins to come up on occasion and the conversation ends with the person asking "But you're better now right?" I only mention this because I end up running into Keifer Sutherland in Union Square and I tell him I was supposed to be his stand in and he gives me the now familiar send off
  33. 2012 - april 5th - I moved back to New York City convinced that I was completely over my disease despite the fact that I was still having diarrhea on a regular basis
  34. 2013 - summerish - have experienced no stomach pains in a year and a half. On vacation to the Bahamas with my parents I eat fried eggs and feel enough discomfort that I have to lie down most of the afternoon. Over the next several months I begin to get some more mild attacks of varying frequencies causing me to throw up and lay in bed when I can.
  35. The attacks start to get more severe and all the throwing up causes me to lose a lot of weight. My median weight earlier in my time in new york was about 135 and at this time I had wasted away to 105 pounds.
  36. 2014 - january 4 - I take a trade show job in Las Vegas and am fired almost immediately likely because I was so skinny and did not look like my pictures. After an equally disasterous car trip to Hollywood to see an old friend I barely have enough money to fly back home.
  37. 2014 - february - After several visits to many different hospitals and doctors I finally get a regular gasterenterologist in the Upper East Side and I believe my life is spared by the anti inflammatory medication he prescribes
  38. 2014 - may - my doctor is amazed that I have gained 30 pounds on the medium strength drugs he gave me and calls it a miracle. I remain on the drug for the time being
  39. 2014 - Summerish - My strength wavers and my condition fluctuates rapidly from week to week. I have missed many days of work and have had to leave many jobs during the day because I felt so unwell
  40. 2014 - September - I have enough money to pay my rent but not anything else including health care. I begin to save up my money to file for bankruptcy. My story is documented here http://www.postmortemmag.com/issue-two-work/2015/5/31/should-have-seen-it-coming
  41. 2014 - december - I typically go home every year for christmas but I knew this year it would be different and that I wouldn't be returning to new york.
  42. 2015 - january - I tell my parents I am staying. In my heart it is until I beat chrohns disease but at the time I do not know. I return to new york to file for bankruptcy and rent out my apartment to a friend who lives there still awaiting my return. Every night I wake up in the middle of the night with hunger pains. This gnawing hunger persists
  43. to this day and I am convinced it is my stomach waking up again after being inflamed for so long. I no longer wake up in the middle of the night and have to eat any longer but I still wake up exhausted and hungry every morning and it has sapped my focus from me and I have trouble concentrating on anything specific and I feel like falling asleep
  44. every evening. My sister and her daughter live with my parents and my other sister and her husband and son live on the property as well. I am again working construction with my dad and feel as if I am being pushed and pulled in all directions accomplishing anything after work seems difficult. I have undiagnosed long term exhaustion.
  45. 2015 - june - i begin taking Humera which causes me to gain another 15 pounds which is where I am now. I have not weighed 150 pounds since 1995 when this all started.
  46. 2015 - December - the drugs don't work. It now seems obvious that I have plateaued with Humera and I will need to go on an extreme diet for the rest of my life in order to fully triumph over this aggressive disorder. This is what I will do in the new year after all the holiday parties are over - no sugar, no processed foods, no fried food, more
  47. broth. I have a Vitamix and I will continue to use it extensively. My hands are covered in paint right now and it is a reminder that things will only change now if I can dedicate myself fully to this cause. I come home and I feel defeated. I cannot continue like this and I know If I return to New York at less than full strength I will flame out
  48. again. I now know what I have to do. Wish me well friends!