My Thoughts....

Over the last week I have come across some truly shocking stories. I've posted most of them below, but there is even one more. Another woman on Twitter lost her cousin when he was 25 to Crohn's Disease last year. This is just another example of how VITAL Crohn's Disease needs awareness.

I just hope that sooner than later that a cure is found. It is starting to become somewhat alarming at how many people are being diagnosed, and living with Crohn's Disease - this needs to be stopped!

Screen Writer of Alien and Total Recall Dan O'Bannon Has Died of Crohn's

This information is from The New York Times via:
http://www.nytimes.com/2009/12/21/movies/21obannon.html

Dan O’Bannon, whose screenplays for “Alien,” “Total Recall,” “The Return of the Living Dead” and other films made him a cult hero among science fiction aficionados, died on Thursday in Santa Monica, Calif. He was 63.

The Writers Guild of America confirmed his death. The cause was Crohn’s disease, a chronic gastrointestinal disorder that Mr. O’Bannon endured for 30 years, his wife, Diane, told The Los Angeles Times.

Mr. O’Bannon had an early start as a screenwriter when he and the director John Carpenter, students at the time at the University of Southern California film school, wrote the low-budget film “Dark Star,” which was released as a feature in 1974.

After working as a computer animator for the director George Lucas on “Star Wars” and trying, unsuccessfully, to develop a film based on the Frank Herbert novel “Dune,” Mr. O’Bannon created the story of “Alien” with the screenwriter Ronald Shusett and wrote the screenplay on his own.

The film, directed by Ridley Scott and starring Sigourney Weaver, is about a spaceship with a vicious monster loose onboard. (The creature begins as a parasite that explodes from a crew member’s chest.) It became a box office hit, a classic of science fiction and horror, and the progenitor of a lucrative Hollywood franchise, with its several sequels.

“I love gore films and I grew up with ’50s monster movies,” Mr. O’Bannon told the journal Cinefantastique in 1979, speaking of the film’s origins. “The idea for the monster in ‘Alien’ originally came from a stomach ache I had.”

In 1985 Mr. O’Bannon wrote and directed “The Return of the Living Dead,” part homage to the George Romero zombie film “Night of the Living dead” and part genre spoof. In 1990 he teamed with Mr. Shusett again, among others, to write “Total Recall,” a violent, futuristic tale set partly on Earth and partly on Mars and based on a short story by Philip K. Dick. It starred Arnold Schwarzenegger and Sharon Stone.

Daniel Thomas O’Bannon was born in St. Louis on Sept. 30, 1946. He attended Washington University in St. Louis and MacMurray College in Abilene, Tex., before earning an M.F.A. from U.S.C.

His other screenwriting credits include “Blue Thunder” (1983); “Lifeforce” (1985) and “Invaders From Mars” (1986), both directed by Tobe Hooper (who directed “The Texas Chain Saw Massacre” and “Poltergeist”); “Screamers” (1995); and “Bleeders” (1997).

He also directed “The Resurrected” (1992), based on a story by H. P. Lovecraft, whom Mr. O’Bannon called “the greatest horror writer who ever lived.”

Besides his wife, he is survived by a son, Adam.

Condolences go out to the family - Dan will live on in the hearts and memories of many people, as well as an incredible legacy.

R.I.P Joshua Coleman

I was on twitter this afternoon, and came across a user who had lost his good friends from Crohn's Disease. I asked him if I could share his friends story on CDSN, and he said yes. In memory of Joshua Coleman (this exert is from http://nerdyjustin.wordpress.com/2009/12/19/r-i-p-joshua-coleman-an...

early this morning, a friend of mine who is also living with Crohn's Disease passed away in the hospital. he had his wife and brother with him at the time. he has been living with Crohn's for 14 years and had made great progress in treatment. he has been a friend of mine for almost a year now, and was a great support when I needed it. he was doing so well, even got off of a few medications and was actually gaining weight. but over the past week he started having a lot of pain and became ill. I talked to him Wednesday while he was laying in his bed waiting for his wife to come home early from work to help him. he made a few jokes and said it’s just normal, which I agree it is from time to time. but he apparently was taken to the e.r. yesterday evening where he was emitted and passed away 7 hours later. he was a great guy and was always optimistic. I met him on a medical forum almost a year ago when I was whining about my own Crohn's problems and we became friends instantly. he even sent be a bottle of Protonix last February because I ran out and had no insurance. he was in much better condition than I was. he only had one major surgery from Crohn's and no longer needed infusions. but this came up out of no where and got him. so it doesn’t matter how well we treat it, doesn’t matter if we go into remission or get slightly more pain free, it can jump up and get us whenever it feels like it. it’s fucking Christmas and now his family has to deal with his loss. he was doing so much better than he was last year, and had planned on being there and able to eat Christmas dinner with his family. there is now an empty chair at the table because of this stupid disease. I’m more angry than upset right now, I just can’t believe it. I’ve never lost anyone from suffering from the same disease as I am and it’s really a bitch slap in the face, especially since I am not even at 50% efficiency as he was. all i can do right now is pray for his family. I need a cigarette and a drink. who cares if it’s bad for me, I really don’t care.

Thank You Justin MaHaffey for allowing me to post this.

Hope for Heather

I was on twitter last week, and met @FriedaW Her daughter at the age of 24 died last year of Colon Cancer after living with Crohn's Disease for ten years. Learn more about Heather at http://www.hopeforheather.org and her blog/memorial at http://www.hopeforheather.com/ Her story and blog is very powerful. An unfortunate example of how vital Crohn's Disease awareness is.

The Kindness of People....

I hope everyone is doing well during this holiday season! I am writing a quick post to just comment on how CDSN has been life changing for me.

CDSN has not only started an amazing new chapter in my life, for the first time in many years - but I have also met incredible people who I am honored to call friends.

Being on disability, and not leaving the house much it can be hard to make new friends. I love my friends, they are wonderful; unfortunately most of them live far from me.

This holiday season, I have received some truly remarkable acts of kindness that I am amazingly grateful for. Thank you everyone for making CDSN everything it is, for helping spread Crohn's and other IBD related awareness, and lastly for CDSN.

Best Wishes and Happy Holidays,
Jason

LeMorning Show on Twitter

Hello everyone! I have not blogged in a while, forgive me? I have been busy with Crohn's Disease Support Network (CDSN) www.CrohnsDiseaseSN.com Things health wise have been OK. After leaving the hospital few weeks ago, I've since restarted Humira. I haven't been on it long enough again to notice any signs. I have been very tired, but taking it easy.

Yesterday morning I had an incredibly unique experience. There is a Twitter "Show/broadcast" that is kinda like The View. They are @LeMorning recommend following them if on Twitter! They are on from Gam EASTERN until 9am WESTERN - 6 FULL HOURS! You can join in on the show also by visiting: http://www.heralddeparis.com/ If you scroll down to the middle of the page, on the right hand side is the scrolling show.

This morning I received a tweet asking to describe what Crohn's Disease is. It was incredible to be able to spread awareness for Crohn's Disease!!! Below is a copy of the discussion.

Best Wishes,

Jason Leitman - CDSN Creator


Beginning of discussion:

(cc) Mel, my sister has crohns...it's pretty nasty. Here's a hint: if someone poops within minutes of eating and reeks of death..get checked



mel) Can you give us & listeners a bit of info on what #Crohns & #IBD is & symptoms?



RT @CrohnsDiseaseSN @LeMorningShow #Crohns cn effect ENTIRE GI tract from mouth-anus& affects Skin, Joints, & Eyes-children can stunt growth



RT @CrohnsDiseaseSN @LeMorningShow Crohn's is an Autoimmune Inflammatory Bowel Disease causes Protein TNF (tumor necrosis factor) 2 build up



RT @CrohnsDiseaseSN @LeMorningShow EVERYONE has TNF - people with Crohn's don't naturally dispel it, causing immune system 2 attack GI tract.



(mel) What is the difference between #Crohns & #IBD?



RT @CrohnsDiseaseSN @LeMorningShow Nausea, Abdominal Pain, Fatigue, Weight Loss, Diarrhea, bloody stools, appetite loss, anemia. It varies.



(mel)RT @CrohnsDiseaseSN @LeMorningShow does that help? <-Yes! I know more about #Crohns than when I arrived on #LeMorningShow today! #learn



(mel) Thank for informing/teaching/sharing with us @CrohnsDiseaseSN! #crohns #IBD #learn



RT @Jason31480 @LeMorningShow I've been living w/ #Crohns 24 yrs -10 diagnosed no remission & been on disability now since 05 from #Crohns



RT @CrohnsDiseaseSN @LeMorningShow and a blog about my experience with #Crohns http://jasonandcrohnsdisease.blogspot.com/ #CDSN



RT @Jason31480 @LeMorningShow thx again 4 tkng the time - it means a lot! I've started a letter campaign 2 @DrOz 2 run a#Crohns #IBD show



(mel) T'was a great time here this fine rainy (in LA) Monday, a special shout to @Jason31480 for educating us about #CrohnsDisease, TY!

END.

Thanks everyone for all the support and encouragement!

Thank You!

Just wanted to leave a quick thank you to everyone for their kind words, and healing thoughts. I have to say, I was very touched by the concern when I was in the hospital. I am truly grateful for all the friends I've made since embarking on this exciting new chapter of my life. I hope this post finds everyone in good health - Jason

Fun Times At Bethesda North...

I spent the night, and most of the afternoon admitted at Bethesda North Hospital. I was feeling sick for about 3 days, and became dehydrated - with a small bowel obstruction too.

I am doing much better, the hospital took good care of me! I just wanted to leave a quick post to thank everyone for their concern; It was very touching. I appreciate the friends I've made on here more than any of you know! I am going to lye down, and watch some TV.

I hope everyone is well, and I will be more active over the next couple of days.

-Jason

Sunday 11.15.2009 Exciting Title I Know!

Hello everyone! Just wanted to start off by thanking everyone who is apart of CDSN. I truly never imagined when creating this network, that people would actually find it. For years I lived my life with great friends, family - but never really knew anyone else with Crohn's Disease.

For me this is turning into an incredible experience. Before CDSN I had never created anything on the web, outside of my personal blog. Hearing the feedback from everyone have been humbling, cathartic, surprising, and somewhat life changing. I've made new friends who can fully understand. When I was diagnosed in 1999, after 14yrs of never knowing what was wrong. I was 19, a point when I was ready to finally embark on MY LIFE. Needless to say, staying in University or holding down a job was challenging. I always wanted to help people, since I was a kid. I had tried returning to University to be a social worker...still only have 4 credits lol. Long story short, I finally feel like I'm accomplishing something with my life; something to wake up for - helping people.

For way too long, I lived my life with Crohn's Disease running it. I've been on disability since 2005, I rarely want to leave the house for numerous reasons - whether it be a bathroom, pain, nausea, fatigue, worry of infection cause of a compromised immune system from Humira...I could go on. I felt *and kinda still do, working on it!* that staying home is easier - when there is a wonderful world around me that is in no way getting fully taken advantage of. In a way creating CDSN has started to help me re-enter my life; step out of limbo and start living again. I've kinda always been a relentless optimist, and never going to let Crohn's the best of me. I am DONE letting it run my life - I am ready to start living again, one day at a time. I am tired of Crohn's ruining so many wonderful opportunities, and relationships...I am someone LIVING with Crohn's NOT someone SUFFERING from it. Sure I know it's incredibly unpredictable and can never know really what is going to happen...but what is the worst that can happen? ....Will never know unless I try....

Thank you everyone who has taken the time to read this...for being a CDSN member..for wanting to spread awareness about Crohn's Disease...for educating yourself in understanding the wide range of complexities that comes with Crohn's Disease...for being brave to share your stories.... Together as a community, we can let the world know about Crohn's Disease- put faces and stories to a disease that far too long has only been something people have heard of, or know someone living with it, but truly doesn't understand it.

I am going to stop rambling now... best wishes to everyone.

-Jason

A Happy Halloween....

Hello everyone! Just want to first off thank everyone for being apart of CDSN! Everyone's kindness, words of encouragement, and rallying have really helped more than any of you will ever know. I am also excited about the domain I purchased going into effect. http://www.CrohnsDiseaseSN.com I bought the domain through go-daddy woo hoo! Just another step in helping the network grow, to help out as many people as possible. Remember also, tweeters #CDSN hash tag and @CrohnsDiseaseSN for the network! Thanks!!!

I had an alright week, recovering from bad flare up last week. I took it easy pretty much all week. Today was nice, I got to go over to my sisters house. and visit with my nephews and her. It was so wonderful to see my youngest Nephew as I have not seen him since he was 2wks old; he's 7mos old now. I posted some pics, in his adorable little skeleton outfit. It was so nice to get out of the house, and have some fun. Being on the Humira my immune system is compromised. I've already had to be pulled off twice due to infection. My GI basically told be to quarantine myself - so I haven't really seen a lot of people lately (another reason I am so grateful for CDSN as it's an outlet for me).

I saw my GI on Monday, and she feels everything should stay with Humira. I don't know if it is working as well as when I first started in May, but I will continue. I hope everyone had a decent as possible week, and a happy Halloween!

Jason 10-31-09

I love you Mom.

Hello everyone!
Today is the 8yr anniversary of the passing of my mother. She died of lung cancer in 2001, 3 days after my sisters wedding. It was very sudden, for which I am grateful she did not suffer. I've decided through encouragement from my friend Tommy to share some memories of her today.

Both of my parents were born and raised in The Bronx, NY. They moved to Cincinnati in the 1970's, and my father lost most of his accent but my mother never did. Her voice was always so thick with a NY accent it was recognizable to anyone who heard it. She was a force of nature, a strong, proud woman.

I was her "baby" needless to say we were close. I have many memories of her playing Bingo- something she loved to do every Sunday. Sometimes she would let me go, and we would always go through the Wendy's drive-thru. She would always get a Jr Bacon Cheeseburger and a Diet Coke. She also enjoyed playing Mahjong with her friends at the house, as well as Bridge and Poker. She also enjoyed going to the riverboats and playing the 5 cent slot machines with her friends.

She also enjoyed talking!!!! Whether it be on the phone or in person, she could talk for hours. When I was in middle school, she went back to work. She started in Gift Wrapping for McAlpins a department store now Dillards. After a few years she moved up to working in the main cashier office. Sometimes she would have to make announcements over the PA and everyone always knew it was her because of her distinctive voice...something I miss hearing. My friends LOVED my mother, got a big kick out of her.

I know she is watching over me, and even though it's been eight years and I can think about her and smile and laugh...I still miss her dearly. Through memories she will live on forever.

Fredda Leitman Feb 8th 1942-Oct 24th 2001 R.I.P

This past week...

Hello everyone! Just wanted to touch base, as I haven't been on the network much the last few days. I am having a flare up that is kicking my butt (no pun intended hahah). Haven't been sleeping well, on top of increased nausea and pain. I go see my GI on Monday, but I hope to feel somewhat better by than. Wanted to thank everyone for all their contributions, kindness, and compassion. I hope everyone else is doing well, with their chins up! -Jason

Update:
Been asleep most of the day. Woke up again at around 8pm, and still feeling like crap. If I don't feel better will have to be admitted to the hospital. Will update with the network! I hope to not have to go...

I woke up this morning and I feel pretty good! The last few mornings have been MISERABLE, so what a wonderful change. I am going to take it easy, let my body recoup, but pretty sure the worst is over. I look forward to a nice weekend, and the upcoming week. Halloween is always my favorite time of the year.

On a side note - Tomorrow is my mothers 8 year anniversary since she passed. I can think about her and smile again, but she is greatly missed. Love you mom!

I'm back!

To everyone following my blog, first off THANK YOU! Second, I'm sorry I've been neglecting. I've been putting most of my focus into The Crohn's Disease Support Network (CDSN), and haven't had a chance to blog.

Things have been alright for the most part. Restarted Humira 2 weeks ago. Last week was great. On Sat Oct 3rd went to a TINY amusement park with my 5yr old nephew, my father and his girlfriend. Had a wonderful time, bonding with him and riding the rides.

Crohn's wise, the Humira has decreased my nausea and pain, but my appetite has become zilch. There are days where I will just plain forget to eat. Thanks to wonderful friends, I'll get a reminder..but some days I will never get hungry. It's my bodies defense mechanism. It knows ingesting food can cause symptoms to worsen. This is a big thing with Crohn's patients. Between nausea lack of appetiy e and malnourishment - I can blink and lose 2lbs. The doctor had me change from Ensure to Ensure PLUS to help maintain healthy weight. It is also CHALK FULL of nutrients I can't ingest any other way.

Thanks to everyone who is continuing to follow my journey with Crohn's, and supporting the CDSN! I am truly amazed and humbled that in just two weeks almost 100 members on CDSN. Keep spreading the word!

Hope everyone has a banging healthy weekend!

-Jason

For Dan and his Wife...

I am sorry to hear about your wife. I created an online Support Network at http://crohnsdiseasesupport.ning.com/ 8 days old and already over 58 people. It is for people living with Crohn's AND their FAMILY AND FRIENDS. There are some truly incredible people on there.

Doctor: I see the WONDERFUL Dr Maritza Palusiak. She has 2 offices one in downtown Cinci and one north JUST off 275 where it crosses with 71. The number is 513-794-5600

I appreciate you taking the time to read my blog, and spread awareness by educating yourself. I know first hand it is hard to see someone you love suffer. That is why http://www.CrohnsDiseaseSN.com is for people living with Crohn's, family and friends.

I wish your wife the best of luck. If either of you have any questions do not hesitate to ask...ANYTHING I have no shame when it comes to Crohn's Disease anymore.

I hope this helps.
Jason

UPDATE:
DAN CHECK THIS EVENT OUT http://www.CrohnsDiseaseSN.com/events/understanding-inflammatory I THINK IT WILL BE HELPFUL FOR YOUR WIFE AND YOURSELF :)

I'm Sorry!

I have TOTALLY neglected my blog!!!! I've been focusing on the Support/Social Network http://crohnsdiseasesupport.ning.com/ which is growing WONDERFULLY! I am extremely excited at how it is progressing.

ANYWAYS....Crohn's wise I've had a REALLY good week. The Humira is definitely kicking in again, and my symptoms have gone from intolerable to tolerable! I've actually been able to get out of the house to run errands, visit friends!..I even CLEANED MY HOUSE! Haven't felt good enough to do a proper clean in awhile. Had my weekly check up with my GI yesterday 10.1.09. She is very happy with everything, blood work looks good.

I am pretty worn out right now, been running around again today. I am going to be kind to my body and take a nap. Thank you to everyone who is supportive and helping spread awareness for Crohn's Disease AND http://crohnsdiseasesupport.ning.com/

-Jason

A good week so far!

I feel like I've been neglecting my blog! As I stated earlier, I resumed treatment this Saturday. It is starting to kick back in. Today was a great day, I actually woke up and had some energy. My pain and nausea were present, but diminished and extremely tolerable. I was able to run errands from 11:30am-4pm. I can not remember the last time I had a day like today. :)

I am BEYOND thrilled that the social/support network I created at http://crohnsdiseasesupport.ning.com/ is thriving. 4 days and 31 members!!! If one person feels like they have a place to turn, and don't feel alone then the network is working :)

Alright, I had a great but LONG day...going to call it an early night.

-Jason

You shall be missed...

Today is somewhat somber. My ex (who is a good friend) called me this morning to let me know his Grandmother had passed away. She was an incredible woman! Over the almost three years I got to know her, she was incredibly kind, smart, funny, and caring. I'll be attending the funeral; not sure when it is.

Crohn's wise, I am doing really good today. The partial obstruction and inflammation have completely subsided. I still have a stiff neck from the Humira, but absolutely tolerable. I'm just going to take it easy today, and enjoy a nice lazy Sunday.

I hope everyone is well, and had a great weekend!

-Jason

Humira Resumes!

I was VERY fortunate to be feeling tremendously better from the partial obstruction. I resumed treatment of Humira today as well. Humira is a TNF reduction medication. TNF is the protein that builds up in the body, causing the immune system to go hay-wire causing Crohn's Disease. With the Humira comes risks. I have to be extremely careful with infections and viruses. Humira weakens the immune system, leaving me vulnerable. Humira also, for me, gives me really bad body aches for about 12 hrs after injection. The first dosage, the loading dose, was 160mgs. I was pretty much bed ridden for a whole day. The body aches kinda feel like the flu, without any other fly symptoms. I will take them, over the Crohn's symptoms ANY DAY!

Just wanted to write a quick post. Supposed to hang out with a good friend today; always look forward to that. :) Hope everyone is having a marvelous weekend!

-Jason

PS
The Crohn's Disease Support/Social Network is going wonderfully! http://crohnsdiseasesupport.ning.com/ 15 members and counting!! I've been able to add: Live Chat, Qik, Notes, Blog Posts, and more! Anyone is welcome, the main goal is to create an online network that offers support and awareness for people living with Crohn's Disease, their FAMILIES and FRIENDS! =D

A NEW DAY..

Yesterday turned out pretty alright. I actually had some solids WOO HOO. It had been a couple of days, but stomach needed the break. I woke up today feeling "normal"! Just regular, tolerable symptoms. Everyday I have pain, nausea, and fatigue. Certain days those symptoms become too much, and I can not tolerate them as easy. I hope to have a nice weekend! Hope the weather turns, and the rain moves away! I could sure use a trip out of the house. Hope everyone has a great weekend!!! Will blog more later...going to enjoy my reprieve :)

-Jason

JOY

Don't want to curse myself...but I am feeling pretty alright! Not going to push it, but hopefully the rest of Friday will be like this =D Hope everyone else is having a good end of the week...and ready for a good weekend.

-Jason

Such a great father

I am feeling much better...just been doing my breathing and taking it easy. My dad went to the doctor and picked up a prescription for me. Then he got it filled, and picked up some Gatorade and Ensure. Don't know what I'd do without him, I'm truly blessed.

Is it Thursday AGAIN?

I woke up this morning, feeling as ill as I did yesterday morning. Last night I had such reprieve of symptoms, I thought I'd gotten through the worst. Woke up with horrible nausea again, and feel feverish. I just hope this doesn't escalate to having to go to the Hospital.

Something I can not express enough, is the unpredictability of Crohn's Disease. Within 5hrs can go from feeling fine, to misery. The disease can react to food, environment, or most of the time for me- out of nowhere. All I can do is breathing exercises, to try and reduce the nausea...and ride out the storm.

I still am pretty sure I have an area that is overly inflamed causing a backup, or partial obstruction. In the whim of feeling good last night, I had some toast; I should have stayed with liquids. Oh well...nothing I can do about it now. One hr at a time...one day at a time.

Hope everyone else is doing well, and getting ready for a fun weekend.

-Jason

11:16am Been doing breathing exercises- in through the nose slowly, than exhale out my mouth. Getting air out of the stomach can significantly improve nausea at times. It's helping, which I am grateful for.

.....End of the day

Well, I am pretty sure I had a partial bowel obstruction today. Thankfully it has passed, and my body is already starting to feel better. It's incredible how fast symptoms can start to diminish after hours and hours of unpleasantness. I am also glad I didn't have to go to the ER and have them use an NG (a tube they stick down your nose into your stomach to suck out obstructions) had to be used. The last time I had an obstruction it was necessary, and amazingly unpleasant. Just glad to be feeling better, and to a new day tomorrow :)

Crohn's Disease Support Network - CDSN IS RELAUNCHING WITHIN THE NEXT COUPLE OF WEEKS!

In Autumn of 2009 I created an online support network for people, along with their loved ones, living with Crohn's Disease or another Inflammatory Bowel Disease (IBD)

You can join at CrohnsDiseaseSN.com (CDSN). JOINING IS FREE (we gratefully accept donations) BUT WE HAVE BEEN CLOSED TO NEW MEMBERS FOR SOME TIME! I AM EXTREMELY PLEASED TO ANNOUNCE WITHIN THE NEXT TWO WEEKS A REVAMPED CDSN WILL BE OPEN TO THE MASSES!!

-Jason

Early Morning...

Oh the joys of Crohn's...Woke up about 5:30am tossing and turning. Eventually, the waves of nausea started. Supposed to go to the dentist today at 10:30am-Don't think that will be happening. That is one of the most frustrating aspects of Crohn's, is it's unpredictability of when it's going to hit me with wonderful waves of nausea and pain; mostly right now it's nausea. To control this, I try taking slow deep breathes, in through my nose and out through my mouth. Getting air out of the stomach can really help control the nausea. The sun is starting to rise...and all I want to do is go back to bed. Think it might be a very long day...

9am- Still awake...canceled dentist appointment. There is no way someone is going to be able to work in my mouth, without me getting sick. I have a bad gag reflex as is! I'm supposed to resume Humira treatment today; hopefully this will bring some reprieve. I hope everyone is having a good day. :) When feeling ill, support from friends and family help more than any medication.

3:38pm- Got some rest on the couch. Tossing and turning a lot, not sure why. Could be the frequent waking up and running to the bathroom. I had to cancel dentist, and all my other doctor check ups today. For the best though.... My GI also recommended I not inject Humira today, and wait till tomorrow. Looking forward to going back on treatment. I am VERY excited though over the new CROHN'S DISEASE SOCIAL NETWORK!!! =D The small things in life...I do love them.

The Journey Continues...

First off, thanks to everyone who has taken the time to comment, send me feedback, or contact me. I really appreciate everything. My week is going alright. I am still rebounding from the last flare up.

Something I have been dealing with that is frustarting at the moment is a side effect from Humira- INSOMNIA!!! The fact that I've had to start, stop, start, and stop again, the insomnia hasn't had a chance to wear off really. I am set to inject this Thursday, Sept 24th. Here's hoping that I will be able to stay on the drug with no infections! (fingers crossed)

I've gotten a lot of questions about what diet is like for someone with Crohn's Disease. There is NO food that will CAUSE Crohn's Disease, but there are certainly foods that give it "ammunition". First off I barley have an appetite to begin with. Secondly eating in the morning is near impossible due to nausea, and my stomach "waking up". For me, the main goal is to eat foods that break down as naturally and easily as possible. This means NO ROUGHAGE! Foods like seeds, nuts, raw vegetables for example do not break down easily with anyone, let alone people with Crohn's Disease! Seeds and nuts can also be extremely painful as they pass through the intestines, nicking areas that are currently inflamed. (not a pleasant feeling in the least) It kinda feels like eating shards of glass, not that I've eaten glass, but I can imagine haha.

For people who still don't have a full understanding of what the damage Crohn's can do: Imagine the intestines as a tube. Then imagine Crohn's Disease attacking the inside of the tube; causing inflammation causing narrowing inside the tube. Over time this inflammation becomes permanent damage- called a stricture. A stricture is essentially scar tissue built up from repeat damage to the same area. Over time the damage starts as little ulcers, that usually bleed causing anemia and fatigue...then they become strictures. The surgery in 2000 I had, the bowel resection, removed strictures throughout my stomach. One was so narrow and damaged, the pathologist had to use a laser to cut into it.

OK back to food... the food can get stuck VERY easily in these areas of damage leading to pain, nausea, and fatigue and the worst a bowel obstruction with possible perforations. I personally have food allergies to nightshades - tomatoes, eggplants etc- therefore my diet is even less. Liquid nourishment is essential. The damage caused by Crohn's can lead to malnutrition. I drink TWO Ensure with high calcium daily. It is the easiest way of getting nutrients, without upsetting my stomach. Once the area is damaged to a stricture, it is essentially dead tissue. I had to majorly cut back on dairy in Jan/Feb 2008 due to a bowel obstruction that caused milk to rot inside me. This was absolutely disgusting WARNING, so I will keep it short. The obstruction somewhat reversed my digestive tract. I would burp and it would smell like flatulence...I would throw up and the taste is something I never want to experience again. Not sure if I can ever drink milk again. END WARNING.

Since I have no ilium or cecum also, I can not absorb certain B vitamins- esp B12. It is important for people who do not have an ilium or cecum to receive B-12 shots. Drink LOTS of water, double the amount of a normal person, and just be as kind to your gut as possible. I've given up alcohol, caffeine, nothing spicy or hot NO blood thinners or aspirin, and roughage. Like I said, it varies for every person. I have an acute case, so what I can or can not eat could be totally different for the next person. Really varies on damage, surgeries, and finding what fits. I highly recommend food journals! If you can find out what bothers you, and what doesn't is one huge step to helping yourself. Seeing a nutritionist can also be something helpful, and someone your doctor can recommend.

Again, I am so grateful for all the positive feedback I've received! It is an essential equation in keeping a positive attitude. I hope everyone is doing well, and look forward to more connections, questions, answers, and sharing my journey as it continues. :) Will write more soon.

-Jason

My Weekend

Hello! It's been a weekend of up and down. Being on the tail end of a flare up, my body needs a few days after to recoup. I have received so many positive comments, and encouragements from so many people. I am truly grateful! Support like that is a huge part of the equation of keeping a positive attitude. I plan on taking all the comments I've received, and will absolutely address them very soon. Wanted to give a quick update, and express my gratitude. I hope everyone is having (had) a great weekend! More to come soon! -Jason

A little bit about my journey so far....

Well, since this is the beginning of my blog- There is probably some info as to how I got here.

I've have had Crohn's Disease since I was a child. Unfortunately, even less was known about Crohn's at the time- The doctors never thought to check. In 1990 I had to have emergency surgery to remove my appendix. The doctors thought for years this was the underlying issue. In reality, it turns out the Crohn's destroyed my appendix. I am fine until 1996, when doing a 1.5 mos trip in Israel I get very sick. I can not keep any food down, I have no appetite, and I lose 20lbs. Was seen my doctor, and given antibiotics. It turns out this was my first MAJOR Crohn's Disease flare up. (flare up is when the Crohn's Disease goes into hyper-active mode and is more aggressive for a period of time). I was virtually symptomless until May 1999. I literally woke up one day, and was exhausted. This continued for days, with the addition of a horrible stomach pain. My doctor sent me for tests. Finally, they found the answer- Crohn's Disease. After YEARS of always being sick, and some doctors telling my parents and myself that it was all in my head. FINALLY a diagnosis.

After my general physician diagnosed me, I was sent to a GI doctor. They immediately sent me to the hospital to lance an abscesses I didn't even know I had (more on that later). After recovering from what would be ONE out of over FIFTEEN abscesses, they started me on steroids and a medicine called Pentasa/Asacol. Very standard start of treatment for Crohn's. I was non-responsive, and the disease continued to spread. They added 6MP, a chemotherapy pill that I had to take every day. This brought about 3-4hrs of puking every morning...GOOD TIMES! After the 6mp they tried Methotrexate....another chemo this time injected subcu in my stomach. After Methotrexate, I was enrolled in the clinical studies for Remicade. (this was 2000). Remicade was amazing...but unfortunately the more I received it my body built up a tolerance. In June of 2000 I had my first major surgery- a bowel resection. Something my GI doctor did not want me to have. With the pain I was having, I knew SOMETHING was wrong. With the guidance of my parents and the surgeon, I proceeded. The surgery saved my life. The damage the surgeon found was enough to cause a bowel perforation. I was a walking time bomb. After coming out of the haze and recovery, I fired my GI doc who tried to talk me out of the surgery. They had to remove a total of 15" of my small intestines including my ilium and cecum. Also removed was 3" of my colon; I was fortunate to never have any bags installed.

After my resection I felt INCREDIBLE. For the FIRST time in my life, I truly knew what being "healthy" felt like. I had energy, no pain, I could depend on my body. Absolutely amazing!!!
This lasted a year. After my bowel resection they put me back on Remicade, with the hope the disease was weakened enough for it to work again- not the case. Out of frustration of nothing working, and being admitted to the Hospital upwards of 8 times a year for flare ups and abscesses I traveled to the Mayo Clinic in Rochester, MN ( about 11 hr drive from Cincinnati, where I live) At the Mayo Clinic they are AMAZING!!! They have an actual Crohn's Disease clinic, and some of the best doctors in the world. Following their advice, they wanted me to start the medicine Humira. PERFECT...WONDERFUL! Finally something new.... I go to get the Humira prescription filled and find out my insurance company won't cover it AT ALL because the FDA has only approved it for Rheumatoid Arthritis, and NOT Crohn's Disease. They start pain management on me, and wait for Humira to be approved THREE YEARS LATER in late 2006: The FDA approves Humira for Crohn's Disease. I contact the Mayo Clinic and since so much time had passed, I had to travel BACK to Rochester for evaluation. This time my father travels with me, and everything goes wonderful. Unfortunately I had to fight with my insurance company to get the Humira approved. The loading dose alone was over TEN THOUSAND DOLLARS. I was extremely fortunate (after weeks of research) to get it worked out to where I am blessed to pay nothing. I have been unable to work since 2004, so I depend on Social Security and an INCREDIBLE one of a kind father; he is truly a hero and I wouldn't want anyone else for a dad. I am very fortunate to have him in my life. Since I live 11hr car drive from The Mayo Clinic it was decided a doctor in Cincinnati would work with The Mayo Clinic in my treatment. After searching and searching for a doctor that was willing to work with The Mayo Clinic docs, I found an amazing doctor. With her help, I started Humira on May 28th, 2009.

Humira has been both a blessing...and a curse. It is a very powerful medication, that I am receiving at an aggressive dosage. The loading dose was 3x the normal dosage, 2nd 2x as strong, and then the last normal dosage; which is 40mgs every other week. The Humira comes in a pre-loaded pen, that I have to inject into my stomach. It couldn't be easier!! The Remicade had to be done through IV Infusion which took over 3hrs every 6 weeks. The first month goes wonderfully! By the end of the mos my symptoms were ACTUALLY decreasing! A reprieve finally....Feeling decent, I embrace this and wind up developing a staph infection. Pulled off the Humira for one month, to let my body properly heal with antibiotics. During this time I also became dehydrated and had what is called a hyper-cardiac reaction. My heart was beating very fast, whilst my pulse was very weak. After a night in the ER and lots of hydration, this was totally taken care of. I go back on the Humira for a month, and develop a sinus infection. 5 days of antibiotics and I have to skip another week of Humira. I was supposed to inject the Humira yesterday 9/17/09, but have to wait until 9/25/09. *Addition* looking back I developed all these infections because I had untreated (unknown) Hepatitis B, along with a cirrhosis off the liver....talk about 20/20 hindsight!


OKAY! WOW that was a lot... I will continue to share my story, and fill in pieces as the blog grows. I just want to spread awareness for Crohn's to help find a cure. If anyone ever has ANY questions, I am not ashamed or embarrassed to discuss anything. Please feel free to comment or ask anything. Will continue to update later, and eventually get to a daily "live" journal of my journey.

To ANYONE who takes the time to read this, I truly am grateful.

-Jason

My First Entry

Hello! My name is Jason. In this day and age I figured I'd start blogging. I am 29years old and live in Cincinnati, OH. I have suffered from Crohn's Disease since I was a child, but unfortunately was not diagnosed until age 19 in 1999. For anyone who doesn't know what Crohn's Disease is: An autoimmune disease where a protein (TNF) builds up in the body. Everyone has TNF, but people with Crohn's Disease do not reduce the TNF naturally. This causes a build up, leading to inflammation and damage throughout the entire digestive system- mouth all the way down. Wikipedia has a WONDERFUL page which can explain better then I ever could on here! http://en.wikipedia.org/wiki/Crohn%27s_Disease is their link. I have been on everything from prednisone to remicade. Currently I am on Humira, which is helping - but have had some setbacks. I've been on disability since 2004, and basically been in life limbo. I know I can't worry about what I can not control, and change what I can. Live one day at a time, and keep on fighting. It will never get the best of me..and I know it could always be worse.

I wish to spread as much awareness as possible. I truly feel the more people are educated, the better chance a cure can be researched and discovered. There is a non-profit The Crohn's Disease and Colitis Foundation of America (CCFA). They are amazing, and really worth looking into. http://www.ccfa.org/

Well I think that's all for now! Will keep updating....Anyone who has taken the time to read, Thank you!! I will keep writing, so check back soon :)

-Jason