Wishing you a Very Merry Christmas
full of love, joy, and hope in our Savior, Jesus Christ!

I had planned on blogging about my 12+ hour drive to FL and the crohns related adventure I experienced. But all I can think about is the children. The beautiful children. I'm sitting here in FL in a hotel room overlooking the beautiful ocean and all I want to do is go home and hug my children and all the children I love young and old especially my beautiful Penpen and Gigi.

Please God watch over all the children

Happy Thanksgiving xoxo

Free app for Crohn's, colitis patients

http://www.cbc.ca/news/health/story/2011/07/25/myibd-app-sickkids.html

Teens and parents dealing with Crohn's disease and ulcerative colitis now have a mobile app that will help them manage their disease and seek help sooner if something is wrong courtesy of staff at Toronto's Hospital for Sick Children.

The free app helps patients track their pain, food, stool and frequency of bathroom visits on their mobile devices. It also provides access to educational tools and the latest information on managing their symptoms.

More than 200,000 Canadians suffer from Crohn's or colitis, known as IBDs or inflammatory bowel diseases, which can be debilitating.

"Some days I'd go to the washroom up to 20 times," says 18-year-old Calandra Carkner, who has Crohn's. "I was exhausted, in constant pain and afraid."

Staff at SickKids say they noticed that patients and families of young children with IBD were missing "red flags" when it came to symptoms and flare-ups.

That led Karen Frost and her colleagues, Dr. Johan Van Limbergen and Meaghan Wright of the Department of Gastroenterology at the hospital to create the app.

"myIBD offers a visual tracking system so patients can monitor their disease activity and seek help when necessary - sooner, rather than later," said Frost in a statement released Monday.

Calandra says the app helps her understand the triggers such as stress or a particular food and gives her some control and lets her focus on her life.

SickKids has arranged for myIBD to be available in the APP Store for iPhones, iPad and the iPod touch and will be available to Android devices later this year.

Drug Allergies

So here is that story I owe you. Back in July I started a new drug for my crohns beast...Sulfasalzine! Right away it made me sick to my stomach and gave me horrible headaches. This has happened with other drugs. No big deal right...It always takes me a couple weeks to get use to a new drug. WRONG! After about 2 weeks I was still having the bad headache and stomach upset. So on a Sunday I was cooking a big Turkey dinner for my family and I wanted to enjoy the day and not feel sick so I didn't take the pills at all that day. I felt better and did enjoy the day with my family. So Monday I started taking the pills again and I still felt good YAY!!!...not so fast...around 4am Tuesday morning I woke up so sick to my stomach and started throwing up and throwing up and throwing up. The headache was so much worse and my body hurt all over. I stayed in bed the entire day. Then Tuesday evening I spiked a fever of 102 so I figured I had the flu. I got up and tried to walk to the bathroom and I passed out. Fortunately my hubby was by my side to catch me. I woke up to him dumping cold water on me. He wanted to take me to the hospital but the cold water actually made me feel better and I did not want to go to the hospital. More throwing up during the night and I still had a fever Wednesday morning. We called my GI and he sent me for blood work to rule out an infection and said if I got any worse to go to the ER. So I dragged myself out to have the blood work. After I got home the fever started getting higher and higher. Hubby was helping me go upstairs and again I passed out and again I woke up to him pouring cold water on me. My kids were home for this one and they were helping pour water on me and talking to me till the fog cleared. They were great, so proud of them. This time he called an ambulance so I had no choice. My temperature was now 103.8 and my blood pressure was very low so off to the ER I went in the ambulance. Lights flashing, sirens blaring. Hubby was in the ambulance with me and my boys were following in the car. I was more worried about them. They put ice packs all around me and started an IV. At the hospital they did every possible blood test and found nothing. They admitted me and put me in a regular room. I continued to have a fever and my blood pressure was still very low. They were pumping me with fluids and several antibiotics. Around 6am Thursday they decided to give me my own nurse and list me as step down care (like after you leave ICU). I was not allowed to get out of bed. After a few hours I still had a high fever and my bp was still dangerously low. So they put me in the ICU. After more blood work and different antibiotics they did a cat scan and several chest x-rays. Still no answers. They kept saying it couldn't be an allergic reaction to the drug. It had to be an infection. More and more blood work and finally on thursday night the fever broke. On Friday I was allowed to get out of bed and EAT. My bp was going back to normal. Saturday morning just before they sent me back to a regular room the GI doc (not my regular GI) said that since they could find nothing else he now believed it was a severe reaction to the sulfasalizine. They took me to a regular room and after some begging let me go home that evening. It took me about a week to get my energy back and feel better. When I had my follow up with my GI he agreed that it was a severe reaction. (Most people don't get such a high fever, usually just around 100 degrees) I told him to get use to this because I'm not like most people. When I do things I do them in a big way. lol. So I'm taking a break form all crohns meds right now. I go back to see him next month to talk about what to do next.
Most people do fine on this drug. My beautiful niece is on it right now and it is helping her a lot and she has no problems with it.
So thats where I'm at right now. I'll keep you posted :)

Love, Laugh, and always know where the nearest bathroom is

Monday Funnies

Gone too soon....

Summer has come and is just about gone. These past few months since my last post my family and I celebrated many wonderful milestones...we came together and we celebrated...its what we do. I got sick and spent some time in the hospital (more about that in another post) My wonderful family came together in prayer, love, and support for me...its what we do. Just last week our family came together again in prayer, love, and support for our beautiful S and N and our beautiful baby MCD who is gone too soon...its what we do. MCD you were too beautiful for earth! I held you in my arms for a brief time I will hold you in my heart forever xoxo

Tuesday's Torture

Last Tuesday was torture! A torture many of you will recognize. Jello, broth, tea, italian ice, clear liquid torture...It was prep day!!! Yes prep day for my Wednesday colonoscopy...with my new doctor... Oh doctors & researchers why oh why can't you come up with an easier way??? I guess they are making some progress (very slow progress). In the 30+ years I've had this beast they finally gave me a prep that didn't taste horrible. I used the Dulcolax tablets and Miralax w/ Gatorade prep. The Miralax had no flavor so you just tasted the Gatorade. I'm not crazy about the taste of Gatorade but it sure beats the taste of the other toxic waste. Same results...drink run, drink run, and drink and run some more. The colonoscopy itself went well. The nurse put the IV in a very awkward place in my right hand but she got in on the first try. Apparently my veins are shot. Most likely from the chemo. They never were easy to get but since the chemo its been so much worse. One stick then the wonderful cocktail to put me to sleep. Ahhhh anesthesia you are my friend!!! The Findings: There is a stricture at the anastomosis (the area of resection) and a few small ulcers plus diffuse inflammation in the ileum. Areas were biopsied and I have to call next week for the results. If the biopsy shows active crohns we will consider switching my meds from the Apriso to Sulfasalazine (which may also help my joint pain). Another option is Methotrexate. I was on the Sulfasalazine a long time ago and it worked well with no side effects. Immediately after the colonoscopy I went to radiology and had an ultrasound of my gallbladder and liver. On my last CT scan in 2010 they found a small polyp on my gallbladder that they want to watch. I can't remember how big it was in 2010 but it is 7mm right now. I have to call and have the 2010 results sent to the doctor. And of course they are always keeping an eye on my liver. Now what do I do after a colonoscopy??? Starbucks!!! Conveniently there is a Starbucks in the Lobby of the hospital. I got my Chai Latte and a breakfast sandwich. YUM............ Love, Laugh, and Always know where the nearest bathroom is

Summing it up with pictures!

Here is a picture review of my Spring... Some birthdays were celebrated A trip to DC Our littlest baseball fan B's first college homerun Celebrating a championship win Fun in the Park Trip to OBX A light parade on the beach is a must Love, Laugh, and always know where the nearest bathroom is

Hello, yeah it's been a while!

Wow...Its been a while...baseball and traveling have been keeping me very busy. Its been great though. We were able to go to just about every college game. I've taken LOTS of pictures and enjoyed watching my boys play together. The team did great. First place in their conference for the regular season and they won the championship tournament. Go Redhawks!!! J, when called upon, pitched great and B played every game but 1 at 3rd or 1st base and hit great. His stats for his freshman year are amazing...drum roll....Brian was named newcomer of the year for their conference and he made the all conference team. I'm so proud of both of them. I've also been doing some traveling with hubby. More trips to the beach YAY! A trip to DC with my nieces and a wonderful family vacation in the Outer Banks. Unfortunately I got a bad cold at the beach that got worse when we came home and I followed that up with a migraine that sent me to bed this past weekend blahhhhhhh. As for my gut...well I was doing so well for a couple months but now (for the last 2 months) I'm back to the same old same old. At first I thought I had a flu bug but no its the beast saying I'm still here...ugh This of course made baseball and traveling a challenge. Lets just say I got to visit a record breaking amount of bathrooms. Some good, some bad, and some down right ugly. Right before I left for our family vacation I had my first appointment with my new GI doctor. He is wonderful!!! We reviewed my history and he of course wants me to have a colonoscopy and an ultrasound. Both are scheduled for the 27th yippie! He ordered bloodwork---15 tubes!!! When I got home from the Outer Banks I had a letter waiting for me with the results of my B12 level. Lowwwwwwwwwwwwwwwwwwwwwww so now I am doing the B12 shots. Once a week for 4 weeks and then once a month. I had my first one today. I really hope it gives me some extra energy. I'm so tired of being tired. I'll keep you posted Love, Laugh, and always know where the nearest bathroom is

Cutie Patootie Tuesday

Spring had sprung/Bathroom reviews

Coming home from 2 weeks in FL to this beautiful spring weather has been so wonderful. Going to baseball games and not freezing...priceless. The boys continued to play well during the rest of their games in FL. The internet connection was horrible at our hotel so I couldn't keep you up to date on the games like I wanted to. It felt so good to be in the sun and between the games and the beach I got myself a nice head start on my summer tan :)


Vero Beach
Vero Beach was so nice. We stayed right on the beach and we were in walking distance of all these great little stores. I was only able to shop at a few of them because most of them are closed by 6pm. But it was nice to window shop after dinner.

Traveling is wonderful but for a crohnie it can be challenging...throw in hours and hours at baseball fields and the challenge can quickly become a nightmare. First of all eating on the run = eating foods that don't like me = pain/discomfort. Then theres the bathroom issue!!! Its hard enough to find clean bathrooms during the road trip but finding them at baseball fields...well lets just say I usually just don't eat. Well not this trip! I not only found many clean bathrooms during our 12 hours of driving (the more I travel the more I get to know the fast food places who have nice bathrooms) but the baseball fields all had REAL bathrooms that were clean and in great working condition. Oh and the one field had a great concession stand that sold all the typical baseball field foods but also sold fruit and vegie trays and granola bars....much better choices for me.

As you know the first week was baseball but the second week hubby was working which means playtime for me :) We left Vero Beach and drove to Ft. Myers for one day and I have to say the holiday inn we stayed in was the nicest holiday inn i've ever stayed in (and I've stayed in lots) Everything clean and new and in the restaurant a complimentary pasta bar with a chef who makes your dish right there and it was goooooood. Service was wonderful! We went to Ft. Myers to visit my cousin and her husband and go to lunch with them. Of course i spied an outlet mall so I went there first :) after racing through as many stores as possible we had a wonderful visit and lunch and then off to Bradenton for a day, dinner with a customer (where I experienced one of the few bad bathrooms of the trip...blah).

Next stop...my favorite place...
Ponte Vedra!!!
We usually stay at the Ponte Vedra Inn and Suites but they were completely booked so we stayed at the Ponte Vedra Lodge and Club (first time there for me)



...and I love it there too. Especially for the cooler months and I'll show you why!
(sorry these first two pictures are dark...I was too excited to check my camera settings)

Awesome and comfy window seat with a view of the ocean.


Balcony facing the ocean




A fireplace!!!


Balcony facing....


...the fire pit!


Also a great place to sit in the sun during the day and look out at the ocean.

All that and.....


...a lovely bathroom!!!

Love, Laugh, and Always know where the nearest bathroom is