Tuesday, September 29, 2009

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.


Sunday, September 27, 2009

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!


Saturday, September 26, 2009

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!


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


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 :)


Friday, September 25, 2009


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.


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.


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.

Thursday, September 24, 2009

.....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 :)


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)



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.

Tuesday, September 22, 2009

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.


Sunday, September 20, 2009

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

Friday, September 18, 2009

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.


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 :)