Donation Challenge !!

I've once again got the donation bug after listening to some great audio webcasts at Everyday Health about the research being done and upcomming treatments for Crohn's Disease. It's so exciting to hear about the work being done to help people like us and the potential for further breakthroughs.

So, I'm issuing a DONATION CHALLENGE to everyone reading this. Here's how it works.

1. Someone (like you!) makes a new donation to either the CCFC (Canada) or CCFA(America). Whatever amount you want, small or large it doesn't matter.


2. Let me know about your donation via my charitable site (BrightSky.org) or via a comment here. (Let me know if you are ok with me posting your name/donation on BrightSky.org, or I will just post it as Anonymous).


3. Here's the kicker: for the first 10 people who do so... I will match your donation with a donation of my own to CCFC. A donation of $10 for each person (for the first 10 people). So your donation is even bigger!

So, let's help out with the great research being done by the Crohn's and Colitis Foundations. Even a tiny amount makes a difference. You can easily donate online on the foundations' websites or off-line via donation forms they provide.

Request to my fellow bloggers: please help spread the word about my initiative by mentioning this post on your own blogs. Thanks!

Crohn's Update and Crohn's Webcasts

I'm feeling better today which is awesome! I also got my lactose tolerance test results back- no, I am NOT lactose intolerant. Yippee. I already knew that, but oh well, now my doctor knows it too. It doesn't change anything b/c milk still sends me running to the washroom the next day. Oh well. I also asked my doctor what the plan is and he wants to keep me on the Salofalk (5ASA) for the foreseeable future since it seems to be keeping my IBD under control. My next question was, what are the long term side effects of Salofalk? He said it's an old drug and the medical community has gathered a lot of research about it's long term effects. There are almost no long term issues, except for a very small chance of kidney problems- which is why we monitor my blood work regularly. So, that sounds pretty good to me.

I also asked him about the random, maybe once a week periods of about 2-5 minutes of sharp pain right around the spot of my ileum. I said it feels like a big gas bubble passing through my bad section of ileum. He said there's no way to know for sure, but it could indeed be that. And to let him know if it happens more often or for longer stretches. So, all in all an informative appointment and some of my concerns have been alleviated. The trick, my readers, is to bring a list of your questions- and don't let the doctor leave until you've asked them all!

On a more interesting note... Crohn's sufferers may be interested to check out this link. I followed a link on Kathryn's Blog (thegutsygirl.blogspot.com) and browsing around there found this page. It is a wonderfully extensive list of many, many audio webcasts about Crohn's Disease. I love audio- I can listen to it while I work.

A List of Crohn's Disease Information Audio Webcasts:

http://www.everydayhealth.com/crohns-disease/webcasts/index.aspx

Scared

For the last few days I've been feeling ghosts of pains which I was hoping was due to a recent re-start of my working out. But today I noticed myself holding my side and I nearly broke out into tears. I'm terrified of my Crohn's getting bad again. I know I'm not in remission but I was hoping the 5ASA would hold it at bay for a while. I know I'm over reacting to what amounts to a twinge, but it's hard not to be afraid when you're reminded of your time-bomb when you hear it ticking.

Come to think of it I have been pretty stressed for a few weeks. *sigh* well that's not helping. At least I know what to start with. And I have an apt with Dr. GI Friday.

Saw this on Kathryn's Blog:

Explained: Lactose Tolerance Test

It's a nice treat when a test involves absolutely no pain or fear, and this is one of those tests. But the Lactose Tolerance Test is balanced out by the fact that it's a huge inconvenience. Expect to be sitting in the waiting room for around 3 hours- bring a book, or an mp3 player. Or both.

You start off by having to eat a special diet 24 hours before the test. Your doctor should provide you with an information sheet about what you can and can't eat. You also can't eat or drink ANYTHING from 12 hours prior to the test. Stick to this carefully or you may be told you can't do the test. Expect to get thirsty. When you arrive you'll be asked to do an initial blow-test. You take a deep breath and blow into a plastic tube which inflates a plastic bag. The lab technician draws a sample of your breath out of the bag via a kind of syringe thing. That's it. Easy as pie.

You then wait while they test to see if your 'levels' whatever that means are low enough for you to take the test. No sense testing you I suppose if you were eating dairy the day before. I was fine so they brought me a glass of some lemon flavoured water stuff. Doesn't taste bad and it's easy to drink. I just don't like lemon so that was a bummer but no big deal. I assume this liquid contains lactose to test you with.

You then wait around the waiting room for 3 hours (!) doing the blow-test every half hour. Expect to have some little burps while waiting around. My hunger and thirst was also growing so that was annoying. But after the 3 hours and your final blow-test you're out of there. Simple, just very inconvenient- especially if the waiting room has uncomfortable chairs.

For myself, I'm not sure what is accomplished by having me take this test. Maybe my Doctor was just curious, because if it comes back positive then I'll have to avoid dairy- but I've already been doing that for years. If it comes back negative, then in theory milk is ok... but I already know SOMETHING in dairy bothers my stomach and I can't have it. So either way I still have to avoid dairy. For me... the test results won't really tell me much. It'll be odd if I do turn out to be lactose intolerant because for the first 20 years of my life I drank almost nothing but milk and ate tons of cheese with no problems. Can you develop lactose intolerance later in life? Can it be related to Crohn's? Questions to ask the doc.

Crohn's Tips - Part 5: The Spiritual Side of Crohn's

Contents
Crohn's Tips Part 1: Introduction
Part 2: Physical
Part 3: Intellectual
Part 4: Emotional
»Part 5: Spiritual
Appendix: Crohn's Tips: Food

• Download the latest edition of the full guide as a PDF: http://www.brightsky.org/crohns-tips-guide.php

I'm betting there are a number of readers who are either wondering what this section will say, or doubting that it will be relevant to them. Especially those who are not religious such as Atheists might think they can skip this section completely. Instead, I ask you to give this a read, because religion and faith are only a small part of what this section will discuss. The spiritual side of your life also includes an examination of your values, your morals, and your overall philosophy of what's important and meaningful to you and what you want for yourself, your family and your future.

What does this have to do with Crohn's Disease specifically? Being diagnosed with a chronic illness can throw our outlook and priorities for a loop. We might feel like what used to be important no longer is, or the looming threat of a flare up or complication might be giving us a sense of urgency regarding finding a direction for our lives and living it to the fullest. Some of us might even be feeling scared and lost, no longer knowing what to hold on to or where our lives are headed. A chronic illness is a reminder of our mortality which can be a frightening, or an enlightening messenger. Here are some tips and things to consider.

• Know what's important. Examine your life and yourself and figure out what is most important to you. What do you value and what do you enjoy? What gives your life meaning? Make sure you are living a life that is in line with these things. Whether you are a businesswoman who wants to start a family, or an accountant who'd rather work with his hands there are many people who's lives are not in line with their values and this can cause stress, depression, and anxiety. If you are coping with Crohn's Disease, wouldn't it be better to do so within a life that brings you happiness?
  

• Understand Crohn's Disease's role in your life. You have Crohn's Disease, nothing can change that. However, the role that it has in your life is totally up to you. It can be a tragedy that brings you down, or a challenge that you face and overcome. You can be a victim or a survivor. You can merely cope, or you can shine. While the varying degree to which your particular case affects your life via pain, complications, surgeries and more is something you have very little control over, your own reactions and outlook regarding your situation is 100% up to you. It's not easy, but maintaining a positive frame of mind, focusing on your blessings, and living the best life you can are things you can find deep within yourself.
  

• Don't neglect your faith. Whether or not you attend church or practise at home, whether you believe in God or are unsure what's "out there", if religious faith is a part of your life it can be an enormous source of strength for you and your family. Now is the time to turn to a faith-community for support and guidance. Even if you don't believe in these things at all, the faith and beliefs of a friend or family member can be a source of comfort and encouragement. Even just learning about another faith can help you determine what you personally believe.
  

• Create a positive environment. Make sure that the people and environment you are surrounding yourself with is one that is positive and helpful. We have all experienced the toxic attitudes of miserable people, or a crushing work or home environment. Learn to say no to people who are a physical or emotional drain on you and don't feel guilty for refusing to visit places or situations that make you uncomfortable or upset. These things can physically and emotionally aggravate an already sensitive Crohn's flare up.
  

• Observe yourself. When we are suffering intense pain and fear it can easily be reflected in our own behaviour and interactions with others. Keep an eye on yourself and make sure you aren't taking out your troubles on those around you. Asking for help and turning to friends and family for a shoulder to cry on or an ear to vent to is not the same as being critical or snippy to those around us. Acting with compassion and kindness can also relieve your own tension and can show appreciation to helpful loved ones. Even the nurses in the hospital will appreciate a kind word and sincere thanks.
  

• Get Involved. Volunteering and charity work can be rewarding by itself. Add to that, the fact that you now have at least one cause that affects you directly. The CCFC and CCFA are frequently organizing bike-a-thons, walk-a-thons, pasta dinners, fundraising drives and other activities to raise money for Crohn's and Colitis research. I personally find it kind of fun to donate in the name of trying to help cure myself! In addition there are many other organizations that could use the help, and getting involved will help keep your mind off of your chronic illness concerns, and help you feel less powerless.

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