Tuesday, September 29, 2009
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
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
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
Friday, September 25, 2009
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
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!!
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
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
Friday, September 18, 2009
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.
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 :)