Monday, December 21, 2009

Holiday Food Tips

The holidays can bring with them a bit of dread for people with active IBD. Food becomes more tempting, less controllable, and more painful. Here are a few tips to make holiday foods less stressful this Christmas season.

- Take your cuts of turkey or ham from the inside of the bird / ham spiral to avoid the seasoned outside skins if seasonings bother you.

- Make your gravy from drippings off the turkey and set some aside for your own non-seasoned gravy. Let everyone else have the flavour-packet enhanced gravy. Yours will be a little blander, but mild on your system. All you need is the drippings, a little water, cornstarch and a pinch of salt.

- Make mashed potatoes with water, a little salt and some non-dairy margarine if milk bothers you.

- Cooked squash or sweat potatoes with a little brown sugar are tasty.

- You can make pumpkin pie without any spices or with reduced spices. Pecan pie is a mild alternative that is usually ok for me.

- Avoid the stuffing if seasonings give you problems.

- Avoid salad if fibrous veggies are one of your triggers.

- Don't forget to take your maintenance medications and to relax a bit during all the hectic holiday bustle.

- Avoid alcohol. Drink lots of water.

- Eat moderately. Regardless of how tempting it can be, don't stuff yourself till you're bursting. A massive meal is hard on your digestive system.

It all boils down to making dishes that are safe for you to eat. If you are having a lot of guests, set aside a separate portion for your own blander versions of the dishes. If you are going to someone else's house, offer to head over there early to help with the cooking so you can make your own separate portions, or bring your own.

You don't have to miss out on the holiday feasting - it just takes a little more care and effort.

Merry Christmas and Happy Holidays to you!

Sunday, November 22, 2009

New Crohn's Forum

A fellow Crohn's Blogger named William has set up a brand spanking new forum for Crohn's discussion. It's a real challenge to try and get a new community like a forum up and running, so if you're interested, head on over and check it out. Join, post a message or two. Come talk to some of us other bloggers.

http://crohnsdisease.forumotion.com/

I'm there under the name "BrightSide" (of course).

Saturday, October 31, 2009

CCFC Video

The Crohn's and Colitis Foundation of Canada has created a new awareness video featuring 2 people suffering IBD. A little boy, and an NHL hockey player.


Monday, October 26, 2009

New/Old Research On Treating Crohn's With Worms

In the recent issue of Mental Floss Magazine (Nov 2009) there is an article about a potential treatment for Crohn's Disease using safe worms and bacteria called Helminths that used to be prevalent in our bodies in the past. The research is/was being conducted by Dr. Weinstock of the Tufts New England Medical Center. The article claims that most of the Crohn's patients who tried the treatment went into remission!

There is also an article about this research at Web MD which says that 72% of people who used the treatment went into remission. These are amazing findings, however the research appears to be several years old. (Here's another medical article about Dr. Weinstock's research.)

Since I'm curious to learn whether this research is ongoing and if anything has come from it, I wrote to Dr. Weinstock asking about the status of his research. I haven't heard back yet, but I will post it here if I do.

I find this to be an amazing sounding treatment and I'm flabbergasted as to why I haven't heard about it before. Why are we only being given the option of expensive and dangerous drug therapies or invasive surgeries? I urge all my readers to look into this research and ask your doctor about it.

Here is an article on Wikipedia about it, it is called Helminthic Therapy.

UPDATE - April 7, 2010
I received a tidbit of information about this research from the CCFC:
The helminth exposure work connects with a wide range of "toll-like receptor" and "cell signaling" research that is ongoing among a number of different scientists across Canada. -Dr. George Tolomiczenko

Tuesday, October 13, 2009

Wait And See

The phrase "let's wait and see" is as old as the medical profession itself. This pronouncement evokes a strange mix of emotions in any patient; disappointment that no definite answers are forthcoming, and relief that nothing serious was immediately identified. Frustration at the process, impatience and worry.

This was my doctor's response at the end of my recent appointment. The appointment by the way that I desperately tried to get into as early as possible. The receptionist managed to squeeze me into a cancellation that opened up a full 2 weeks before my scheduled appointment.

Fortunately (or unfortunately depending on your outlook), the pains I described in my last blog post had lasted for two weeks and then slowly subsided. Which means my appointment consisted of me saying essentially something to the effect of "Well, I was having pains..." to my doctor who scribbled notes about the description and duration of the pains. In the end however he suggested it may have been something acute (read: temporary) and said "let's wait and see" if it returns.

So, I'm back to my old situation. Feeling pretty good though a bit tender, and wondering what in the heck that was.

Thanks to everyone who wrote comments about their experiences on the last post- that really helped me to not be so scared!

Wednesday, September 23, 2009

When Pain Comes Back

There's a reason why I say my Crohn's Disease is like a ticking time bomb in my abdomen.

For many months I have been feeling nearly perfect. I was even starting to introduce foods I have not eaten for years- like grape jelly (joy!). I was regularly working out again. But the time bomb never goes away and 2 weeks ago I started getting pains again. Aching pain and tenderness with occasional stabs of pain during the day. At first I thought this was a direct result of stress + fatigue + a huge meal of Chinese food + a tenacious cold. But now, a couple weeks later most of those possible causes have been resolved and I'm left with no excuses.

I have an appointment with my GI scheduled in mid-October, but after a verbal flogging by my loving boyfriend and a reminder that I need to be a vigilant general overseeing my "troops" (you gotta love the dorky-sweet analogies of someone who loves you and is desperate to talk some sense into your stubborn brain any way he can), I called the GI today and got on the waiting list for a sooner appointment should someone cancel. BF was right of course... if it's bad enough that I'm in tears of fear about it- then I should darn well call the doctor and try to get in sooner.

Funny how you start to believe you are just fine and you've put this disease behind you... and then bam! The return of pains can reduce you to a terrified ball of misery. I should not have been blindsided by this. When I had my abscess surgery a year ago, the surgeon (a wonderful woman with a fantastic bedside manner), told me that my section of small intestine had major fibrosis (hardening of scar tissue) and would have to come out "sooner rather than later". My Mom and I had exchanged scared glances and asked what she meant by "sooner". She said something like "a year or so". At the time I sighed in relief that I was not getting a resection then and there, but my my my how fast a year goes by. I now wonder whether these pains are the harbingers of that fateful prediction the surgeon made. Am I headed down the road of a resection surgery?

I pray that option is not in my future, but since I can feel the 3-4 inches of hardened small intestine by lying on my back and feeling along the path of it - like a piece of garden hose in my abdomen - I will not be surprised if that's my only choice. It's just frightening.

Have any of you readers had a resection? How do you feel now?

Monday, August 17, 2009

Crohn's Disease, Food, And Travel

I recently returned from a one week trip to the west coast of Canada and this got me thinking about how my Crohn's Disease has settled into one particular area of my life: food.

My disease is currently managed. I feel fantastic, bathroom trips are normal, pains are practically gone, I have a lot to be thankful for. I credit my blessings with two main things: the anti-inflammatory drug 5-ASA, and my complex and tightly controlled diet.

To briefly summarize, I kept a food journal for months and went through a lengthy elimination diet process and I now eat zero: dairy, spices, acidic foods (fruit, vinegar, tomato, citric acid, ascorbic acid, lactic acid, etc), gassy veggies, fried or fatty foods, caffeine, whole grains, fibery foods or alcohol. There might be other things I eliminated but I can't remember right now. It's a long list.

This means that I have to cook or prepare most of my food from scratch. Nearly every prepared or pre-packaged food product is spiced, seasoned, covered in sauce or preserved with citric acid or some such. Or contains dairy. Ug. Over a longer period of time I've found a few replacement products at my grocery store like soy cream cheese that tastes good, rice milk, soy cheese slices, un-spiced bacon, egg whites, milk-less bread, margarine etc.

As you can imagine, nearly all restaurants are a no-go for me. You may THINK you are getting a cooked from scratch meal at your favourite expensive restaurant, but no. Most foods are prepared ahead of time or from a box. (But I want PLAIN mashed potatoes! Sorry ma'am they are all pre-mixed with garlic and butter. But can't you just mash me up a fresh potato? Nope.) Which means I am often left with a compromise of plain pasta noodles (brushed with olive oil) which they charge me usually $10 for (!) and some deep fried shrimp appetizer. I realize deep fried is bad, but if I just eat a little bit I'm usually ok. I can eat at sushi places b/c that is fresh, plain and made to order as well as some stir fry places like Mongolian Grill.

However travelling makes me feel a bit panicky. Even with half my suitcase stuffed with food, I still need to make a bee-line for the nearest grocery store upon arrival and cook most of my own meals, so I need access to a kitchen. We went out to restaurants a couple times and the fantastic sushi place we went to was to die for. But the rest of the time I just got noodles and shrimp.

Not knowing where you are going to get your next meal... or being trapped in the airport system with nothing but a few peanut butter sandwiches stuffed in your carry-on can be nerve wracking. It's almost like being reduced to your survival instincts. Food is no longer a given guarantee.

If you are in the same boat as me- I sympathize. I possibly have a cruise coming up next year which is even scarier: no grocery stores!

Here are a few travel food tips:

- Most airlines pressurize their luggage cabins. You can transport food in your luggage except for fruit and meat. Actually anything that needs refrigeration is out of the question. Seal things in zipper bags in case they leak.
- Most restaurants will have a small number of un-spiced things you can get. Plain pasta, baked potatoes, rice, veggies etc. Ask about any un-marinated meats like steaks, seafood etc.
- Sushi places are great for controlling what goes into your food. You CAN get cooked sushi like shrimp and crab, and you can even get vegetarian. Basically veggies wrapped in rice. If you don't like the seaweed wrap you can ask for it to be made without it: wrapped in rice only. Betcha didn't know that!
- If you are travelling in a foreign language country, ask someone to write out your list of food issues in the local language for you, so you are not stuck trying to explain.
- If acid-y things are a problem- ask for no lemon in your water.
- Some accommodations come with a kitchen area- check out bed and breakfasts, cottages and vacation homes instead of hotels.
- Some restaurants or hotel kitchens will warm up your food for you if you bring your own.
- You can bring your own non-liquid food onto a plane in your carry on. Avoid meat or anything that can spoil. Fruit is often not allowed to cross borders, nor can several meats.

On the up side of life, I seem to be growing more tolerant of 'risky' foods and can eat some of them in small amounts. I hope this trend continues!

Sunday, July 5, 2009

Busyness and Life

I imagine that fellow blogger Alicia found herself in much the same situation that I currently do. My life is at a critical crossroads- I'm feeling well enough that I don't need the therapeutic effects of writing this blog, and I'm juggling a ton of exciting personal and professional projects as well as a lively family life and a growing relationship. I find that I need to start giving the most important of these things priority in my life. My time, my energy and my attention. A day long trip to the beach with family (along with a business related talk with my brother) reminded me of what is really important- what I really want in my life. A family and the opportunity to grow my professional projects into something successful.

I tend to be a bit like a kid in a candy store. Every interesting thing that comes my way- I jump on board sampling a little here and a little there until I have a mountain of hobbies, activities and projects. Jack of all trades and master of none. Which is why I've been in a process of streamlining. Cutting out the things that provide the least reward for the most energy expended. Among the things on the cutting floor will be, I think, my poor guinea pig. A fun, small pet who has become a bit nippy due to the fact that I don't have time to give her the attention she deserves. I think I will be putting her up for adoption soon.

Also cut is this blog. Don't worry readers- I won't be taking this blog down or abandoning it all together as I still enjoy writing here. But it does mean that my posts will be less frequent. No fluffy updates on daily life- I will try to just write when I have something meaningful to add on the topic of Crohn's Disease. I'm not gone- just less frequent.

My advice is underlined here: remember that browsing the web can give you a skewed feeling of how bad this or any disease is. Those of us who are feeling good, have less of a tendency to post online. It also means hope for you- nothing is permanent- including suffering!

Thank you for reading and commenting- and please continue to follow this blog because I will continue to write from time to time. Meanwhile- don't forget that my Free Crohn's Tips E-Guide is available for download.

Thank you and best wishes!
~Bright Side

Monday, June 22, 2009

Meditation and Crohn's Disease

What Is Meditation?

Meditation is the process of training your mind to be calm and focused on a single thing. That's it! I bet you were expecting something exotic and complicated. Actually, meditation doesn't have to involve chanting or bowing or any kinds of rituals or anything like that. In fact all you need is yourself and a comfortable place to sit. During meditation, we are learning how to prevent the random, often unhelpful chatter that goes on in our minds: memories, day-dreams, opinions, criticisms, worries, ideas, complaints, etc. A mind that has been training in Mindfulness Meditation for a while is able to remain focused on a single task or thought without becoming distracted, or lost in thought. This helps us to be more effective in our daily lives, less distracted, and more mindful and present in each moment. Just like an athlete trains his or her body to get very good at given activity, we have to exercise our minds to be clear and focused.

How Does Meditation Help With Crohn's Disease?

As we know, many physical conditions are aggravated by stress, anxiety and worry. Digestive tract ailments are even more sensitive to these mental states. In addition, suffering with a chronic illness can wreak havoc on our thoughts and emotions. We can begin to start falling into unhealthy and unrealistic thoughts such as worrying that we will never feel better, fearing the unknown future, and even sinking into a woe-is-me pattern. In addition, we can sometimes lose focus on what's positive in our lives- our blessings, and sometime we might not notice that we are taking out our frustrations and fears on those around us- maybe being critical, snippy or jealous. Practising meditation can help us increase our awareness of our own thoughts and behaviour at any given moment, and train ourselves to think logically and positively. We can also help ourselves to avoid thinking about our illness constantly- and to be aware of all the beauty and joy around us.

How To Start Practising Mindfulness Meditation

Just like learning any new skill (like how to play piano), meditation takes practise. Be prepared to to practise regularly and to have trouble at the beginning. That said, meditating is very easy- especially if you don't put any pressure on yourself. Try to dedicate a minimum of 15 minutes per day. If you can't find that much time, even every-other day or just whatever time you can find, will be helpful.

Find a comfortable place to sit. Some people may find sitting cross-legged on the floor or on a cushion to be hard on their back or knees, so try sitting either on the floor with your back against the couch, on the couch with your legs crossed, or on a chair with your feet flat on the floor. The key is to be comfortable so that you are not waging a war against physical aches and pains- but not so comfortable that you feel sleepy. The goal of meditation is to remain alert and aware- so sit up straight with your back and neck aligned vertically- use back support if you need to, but do not sink your whole weight back into a sofa-chair or you may get sleepy. If you feel sleepy during meditation, try meditating during a more alert time of day, or this may be a sign that you need more sleep.

For the purposes of this tutorial we will use one of the most common objects to meditate on. Your breathing. The in and out of your breath is a natural and rhythmic thing to focus on. Don't try to control your breathing or to breathe in any kind of purposeful or special way. Just breathe naturally and follow it with your mind. As your breath goes in and out you might focus on various aspects of it- the sound, the feeling in your chest, the breeze at your nose- it doesn't matter- focus on what ever aspect of the breath is most noticeable for you. Beginners might also find it easier to stay focused if you count the breaths. Count to 10 then start back over at 1. We aren't keeping score here.

Here's how it goes. Turn off all sources of noise like TV or radio. Find a quiet room. You take your seat, close your eyes, and say to yourself (silently if you want) that you are going to meditate now. Mentally put all other worries, thoughts and tasks aside for later. Take a few deep calming breaths and physically relax your body - especially points of tension like neck, jaw, back, shoulders and stomach. But don't get so relaxed that you aren't sitting up straight.

Now that you're ready, allow your breathing to return to it's normal pattern. Place your mind gently but firmly onto the breath. This means you are focusing on the breathing and not thinking about anything else. You aren't even thinking about meditating or wondering if you are doing it right. Your only thought is the in and out of your breath. Completely clear of all other thoughts or emotions. Keep your mind there firmly but without force. This isn't a wrestling match with your mind.

Since you're a beginner, the first thing you'll notice is that your mind is a spoiled child. It absolutely does not want to remain in one spot. Other thoughts are going to sneak in as subtle thoughts behind the breath, or even full blown distractions where you totally forget about the breath. What am I going to make for dinner? Did I check the mail? Am I doing this right? My leg is itchy, my butt is sore, my throat is dry. Tomorrow I'm going to the movies and that will be fun. Did I pay the phone bill? Remember that time we went to the beach? I like the beach. etc, etc, etc.

Your child-like mind will try to convince you that all these thoughts are suddenly so very important. Your mind is tricky. It will do anything to avoid sitting still. It will even try to snooze if all else fails. The untrained mind does not like to be held in one place on one single mundane, uninteresting thought. But that is the whole point!! Shouldn't we be able to expect our mind to do what we tell it to do? Aren't we in control? What's with all this spoiled-brat chatter? Part of Mindfulness Meditation is training our mind to do what we tell it to do.

Each time you realize your mind has wondered, don't chastise yourself or be disappointed. You haven't failed. The mere act of catching your mind wandering is what we are going for here. Catching your mind wandering means that some tiny corner of your mind was disciplined enough to notice the wandering. That corner is what we want to build on. So when you catch yourself wandering- be happy that you have succeeded in noticing the chatter. Then, gently let go of the current thought, put it on a shelf for later, then place the mind back on the breath. In and out. Clear. Focused. Wandering...... hey! Let go of the chatter. Re-focus. In and out. And so on!

Each time we catch our minds wandering, we make that tiny mindful corner of our mind stronger and more aware of what's going on. Over time, with regular meditation practise we get better and better at staying on the breath. The length of time that we are distracted shortens. The amount of subtle background thoughts lessens. We learn that holding too tight or too loose to the breath causes the mind to slip out like a wet bar of soap. Our ability to remain focused and mindful strengthens.

As we continue to practise we see benefits in our daily lives. We can remain more focused on a task, activity or project. We become less easily distracted. We are more mindful of what's going on around us and what we are thinking. We catch ourselves being too critical or depressed. We notice when we have been thinking about our Crohn's Disease too much and need to let go of those thoughts and have some fun. We develop a more realistic outlook on life and our stress is reduced as we find solutions to our problems or realize that our troubles are not as insurmountable as we thought. We become more compassionate because we realize that just like us, all of our fellow human beings are suffering with their own troubles and worries that we probably can't even see- just like our invisible IBD.

Meditation is used by millions of people around the world. Us westerners are late to the realization of what a powerful tool it can be. Even science has begun quantifying proof of the benefits of meditation. Practise your meditation regularly for the best results, and be patient with yourself. Just like learning piano, it will take time to see results- but it's more than worth it!

Further Resources

Monday, June 8, 2009

Bloggers Be Aware of Wellsphere & HealthBlogger Network

I recently received a comment to my blog inviting me to syndicate my blog through WellSphere (Health Blogger Network) - a website which offer health and wellness information which from what I can tell is mostly made up of other people's blog posts.

I completed the first step but then decided to do some digging. I found some disturbing articles such as:

http://e-patients.net/archives/2009/01/the-wellsphere-blogging-controversy.html

and

http://www.getbetterhealth.com/how-the-health-blogosphere-was-scammed/2009.01.28

And so, I decided NOT to syndicate my blog on Wellsphere. I don't agree with these kinds of practises. Each of my fellow bloggers will have to review Wellsphere for themselves, all I have to say is- search engines are your friend. Research any offer that seems too good to be true.

Hmm. I guess they weren't counting on one of their automated invites to land on the blog of an Internet-savvy IT professional. Online advertisements are cheap and easy to set up and if you have a website full of content with high traffic you can make a bundle of money. If you don't have to create that content yourself- it's almost pure profit minus hosting and bandwidth costs which are minimal. Luckily info about practises like this tends to get out and is easy to find.

A Birthday, Crohn's, and Food

My birthday came and went recently and I was reminded once again of how Crohn's Disease has settled into my life. It's not all bad actually, but rather.... inconvenient.

A birthday is always a good time to take stock of your life. I find myself sometimes looking at all the things I haven't done or the things I don't have. I have to mentally shake myself and start looking at all my blessings. One of the big ones being that my Crohn's Disease, is for now, being managed with 3 pills of Salofalk (5ASA) with breakfast and 3 with dinner. All in all I feel pretty good, meaning that if I stayed like this for my entire life, I'd be ok.

The main trouble is that I have to be very, very disciplined with what I eat. It was my birthday though, so I thought I could be daring. We went out for sushi and I got my typical shrimp, cucumber and lettuce rolls. I for ask them to be made without spices or wasabi so it's great. But there was other tasty stuff on the table. Some kind of tofu soup that was delicious but also had onions soaking in it. As well as some kind of meat filled dumplings with various tasty seasoned fillings. Don't forget the salad. Raw, fibrous greens. Oy! The next day I was not feeling well at all, though I had to spend the whole day outdoors helping with a huge arts & crafts show. Funny how angry bowels can sap your energy and make walking around feel like a strenuous activity.

I'm feeling better today, but it's still a toss up whether my food fling was worth it. Those were some darn good dumplings. Maybe next time I'll stick to my shrimp and spice-free, cooked, sushi.

Speaking of trouble foods, have you experimented with any common recipes to make them more Crohn's friendly? I recently read that traditionally, teriyaki sauce was just sweetened soy sauce. Here in the west we've been adding garlic and other spices. (yeah we like to cover up our food here). So I'm going to try making my own version of a teriyaki sauce by mixing soy sauce and brown sugar. I wonder how that will taste? I like experimenting with new recipes - tonight I'm going to try making a pork and potato stew on a bed of rice. Good thing I bought a new apron at the art show!

Do you have any good food substitution tips to share?

Here are my favourites:

-Cream cheese >> Yoso brand soy cream cheese
-BBQ Sause on chicken or fish >> honey or olive oil
-Milk on cereal >> President's Choice brand original fortified rice milk
-Butter >> Olivina brand margarine
-Lettuce on a sandwich >> thin slices of cucumber
-Store bought broth/gravy >> home made broth w/ fat skimmed off. Added salt.
-Milk in pancakes or porridge >> water or rice milk
-Milk in boxed mashed potatoes >> water and a tsp of margarine
-Various potatoe chips >> reduced salt Lays
-Whole eggs >> liquid egg whites
-Pudding snacks >> Belsoy brand soy puddings
-Ascorbic acid (Vitamin C) >> Ester C supplements (non-acidic/buffered)

Tuesday, May 19, 2009

Your Life For One Billion Dollars?

I love hypothetical questions, so here's one that made me really think, and then made me thankful:

One billion dollars is a lot of money. Enough to buy any darn thing you want, travel or live anywhere you desire and to be whoever you want to be. It's enough money to fund exactly the kind of life you want. What would YOU do for a billion dollars?

What if someone offered you that money in exchange for your life? Your whole life. Hold on now- that means everything. Every item you own from your car to your house to your photographs. Your job. All your friends and family. Even your memories, skills, and experiences that you've accumulated throughout your life. You'd get one billion and your memory would be wiped and you'd be placed in a random city. But you're a billionaire and you could start over from scratch.

Think about it. That's a LOT of money. But it's a high price.

If your answer is "No Way!", that you would never trade your life for that or any amount of money, then you should think about that for a moment. That means that what you currently have is worth more than a billion dollars. That's right, in essence you are already a billionaire. Pretty cool eh?

If you would seriously consider making the trade, perhaps you're still young and unattached, or perhaps you're missing out on making the kind of connections or having the kind of experiences that provide true value to one's life.

What about you? Would you trade your life for One Billion Dollars??

Friday, May 8, 2009

Introducing: The FREE Crohn's Tips E-Guide!

Those of you familiar with my blog will likely have seen my series of posts with tips for coping with Crohn's Disease. The tips are divided into the main areas of your life: physical, intellectual, emotional, and spiritual. I have now aggregated and improved these posts into a single PDF document, and I'm publishing this as an e-guide (like an e-book but shorter), free for the whole world! You can download it, print it, read it, and share it.


When I was first diagnosed, I went searching for a book or anything really to help me with coping with crohn's disease, but I found that most of the books and resources are focused on the medical issues. What is IBD, what are the surgeries, drugs, and tests like. I haven't found much regarding tips for just living day to day with this disease. Now, with a little help from some fellow bloggers I've put together a 15 page booklet with these kinds of tips. I will be revising and updating the document, so if you want to share it, please share this link so that people will always get the latest version.

Share and enjoy! And please, let me know what you think!

Wednesday, May 6, 2009

Tuesday, April 28, 2009

Pizza Bad

Pizza is bad. Soo bad. Pizza is evil.

*groan*

But, but, it's so delicious! But, but, I only had 3 bites!

*whimper*

The almost exact words of my brother's girlfriend standing next to me: "You know that's going to be good for like 20 minutes tops, then you'll be in pain for what, 2 days?". She sounded like my conscience.

I ignored her. And my conscience.

"Hello washroom my old friend... I've come to live in you again..."

Pizza bad.

*beep* *beep*

Cream of wheat is ready. Cream of wheat good. Good recovery food.

*sigh*

Tuesday, April 21, 2009

Yesterday's Online IBD/Crohn's Support Chat

The first ever Online IBD/Crohn's Support Chat was yesterday evening, and I think the feeling was that it was a success! We introduced ourselves, told our stories, and asked lots and lots of questions. It was VERY encouraging to get feedback from people who are going through the same thing. Those of us feeling well tried to provide support and encouragement to those who are battling bad flare ups right now. There was certainly a positive mood of friendship. We all agreed that we should do it again!

So, set a bookmark! Here is the location that the chats will take place, the next date and time will be announced here on this blog (and probably echoed by some of my fellow bloggers!). You'll no longer need to request to participate by email.

http://www.ofitall.com/discussion/

Thanks to everyone who participated last night!

~Bright Side

Friday, April 17, 2009

Online Crohn's/IBD Support Chat

Myself and a couple other Crohn's bloggers, namely Kathryn (http://thegutsygirl.com) and Jenni (http://jennisguts.blogspot.com) are participating in an online support chat for people with IBD/Crohn's disease. We were musing about the lack of support groups in our cities, so I figured, why not just get together online from the comfort of our homes. Ah the beauty of the Internet. *laughs*

The First Ever Online Scheduled Crohn's/IBD Support Chat

When: Monday, April 20, 7:30pm EDT

How To Join: Use email to get in touch with me: brightsideblogger at gmail and I will send you a link and information.

If you can't make it to this Monday's chat, you can still email me and I will let you know about the next one.

Please note: the chat is to be a family-friendly event, it will be moderated.

See you there!

Tuesday, April 7, 2009

Crohn's Tips - Part 4: The Emotional 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


The emotional effects of Crohn's can often be just as devastating as the physical ones, and a diagnosis is scary and confusing for many people. Fear about treatments and outlook, uncertainty about what your future will hold and embarrassment about the effects and symptoms all jumble together and can hit a new Crohn's sufferer hard. This is a challenging disease, made harder by a stigma surrounding bowel diseases that is thankfully starting to be lifted. People are becoming more open and honest about the conditions they suffer with and those around us are becoming more understanding of the various ailments and disabilities that affect their friends, coworkers and neighbours. While Crohn's Disease can hit you emotionally like a ton of bricks, there is good news and hope- starting with the fact that Crohn's is not a terminal disease, it is treatable and manageable and you can still live a happy, productive life.

The first step to dealing emotionally with Crohn's is to gather a support network of loved ones and professionals around you. Step two is to take charge of your situation by learning and following treatment plans. Step three is to make sure you are viewing your situation realistically and not losing sight of all your blessings under the shadow of this new looming problem.

You can do it. There are many people living dynamic and happy lives even with a diagnosis of Crohn's Disease. Take football player David Garrard, he was diagnosed with Crohn's Disease in 2004 and it has not put a stop to his career as quarterback for the NFL Jacksonville Jaguars. You can't get much more active and challenging than football. Stories like his are everywhere. Ask around and you'll often find stories of friends of friends who have Crohn's Disease or Ulcerative Colitis and more often than not, these people made it through their treatments and are doing well. The number one tip for the emotional side of coping with Crohn's is that you are in control of your own frame of mind. You can choose to be dire and depressed or you can choose to be positive and determined. Staying positive also reduces stress and anxiety- big aggravators of the disease.

Here is a list of specific tips and things to think about.
  • Turn To Loved Ones. The people you love are an enormous source of help, support, encouragement and even distraction. Make sure your friends and family know what you are going through and don't be afraid to be frank about your need for a shoulder to cry on, an ear to vent to, or just a encouraging presence. You would be surprised how willing people will be to help you. Helping others feels good and strengthens relationships. You can also stay alert for opportunities when you can return the favour by helping someone during their time of need. Many studies show that individuals with good support networks have shorter recovery times and report less severe symptoms.
  • Socialize. It's so deceptively easy to become a recluse when you aren't feeling well. You try to hide your suffering, fearing the opinions of others, or maybe you're trying to protect loved ones from worrying about you. Maybe you don't want to be a bother or don't want to request that the group eats at a restaurant that you can handle. Maybe you're just miserable and want to be left alone. Shutting the world out is a bad idea. The support of friends and family is vital, and a lot can be said for the welcome distraction and lift that a casual social engagement can involve. Suggest something appropriate to how well you feel, even if it's just a low key gathering at someone's house. At the very least, get on the phone and keep in touch. You don't have to go into details when people ask how you're doing, a short answer will suffice and you can politely avoid any personal questions you don't want to answer. The point is, stay connected. Loved ones are a life-line, in more ways than one.
  • Observe Yourself. Keeping an eye on your own emotions can be a source of encouragement and also help you catch yourself if you start to sink into a depression. I have found that keeping a personal journal is very therapeutic- it allows me to see how far I've come, recall things I've vowed to do when I feel better, catch myself being too self critical, and recall times when I had a lot of fun. It can be very helpful to pour out your feelings, raw and uncensored, to a journal which won't judge you. It can also help you emotionally prepare for things like surgeries or to hash out what's been bothering you. If journaling doesn't appeal to you, try setting aside a few minutes each day or each week for some self reflection. Make sure you aren't losing site of the big picture and all the great things you also have in your life.
  • Live When You Can. One of the most emotionally difficult things to deal with when going through a Crohn's flare up, is how it changes your life. You become physically unable to do the things you want to do or are used to doing, and you lose a lot of your independence and have to lean on loved ones for physical and emotional support. One of the most important things you can do for yourself, is to remember to do all those things you couldn't do, now that you feel well. Repay the kindness others have shown you, get out and move, exercise, vacation, make the most of the times when your disease is in remission or being managed. It's too easy to lament your inability to go outside for a bike ride when you aren't feeling well, and then get too busy or distracted to do it when you're well. Have no regrets, so you aren't cursing yourself during your next flare. This doubles as a physical tip, but the emotional benefits can't be overstated.


NOTICE: My full Crohn's Tips series will be updated and released as a free PDF e-guide soon. Check back to this blog for a post about it's release.

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Monday, March 30, 2009

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!

Sunday, March 29, 2009

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

Wednesday, March 25, 2009

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:

Wednesday, March 18, 2009

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.

Monday, March 9, 2009

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


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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Sunday, February 1, 2009

Crohn's Tips: Food

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


Food can be a nightmarish struggle for people with Crohn's Disease, Ulcerative Colitis, Irritable Bowel Syndrome, Ulcers and more. Often, trying to find pre-made food in the store like soup is a struggle. I for example can't have anything acidic or with spices in it. That rules out ALL canned soups which contain seasonings, onion, MSG, you name it. Even the tins of broth are a problem. I also can't have any dairy which also rules out a lot of things too. So, I've learned to be creative. Here are some tips I've learned over the years:

  • Rice milk can be a good alternative to real milk for cereal, cooking and baking. The vanilla variety may be too sweet for you, if so try the original. Other variations you can try are soy milk (higher in protein), oat milk and almond milk. Try your alternative or organic food section in the grocery store to find these products. You can even get alternative milk shakes in flavours like chocolate and strawberry.
  • There are a lot of soy products which are tasty in their own right. I've been enjoying Belsoy vanilla puddings and Yoso brand soy cream cheese.
  • Always try substitutions. For example, if you can't stomach the spices or the fiber in the seaweed of sushi rolls, make them without spices and with rice-paper instead of seaweed wrapping.
  • Experiment! Take a tasty looking recipe and substitute or remove ingredients that you can't have. You have nothing to lose but a little time, and in my experience it usually turns out great.
  • Cook in bulk. Have food (especially meat) pre-cooked and frozen for days when you are feeling awful. For example, cook a dozen pork-chops in the oven. Let cool a bit then freeze them. You can then take one out as needed, add about a teaspoon of water on it, and microwave. Add some canned veggies and pasta, rice, bread or potato for a well rounded, healthy and easy meal.
  • It's relatively easy to make your own broth as a base for soups, stews and gravy. Simply boil chicken breasts for about an hour till the chicken is fully cooked and the broth is clear-yellow. Strain out the chicken and freeze the broth in ice-cube trays to save for later use. Season to your own taste when you're ready to use it. Lots of salt will reproduce the taste of store-broth. Cook a roast beef in your crock-pot (slow-cooker) and save the juices for broth. Keep in mind that you will want to let both chicken and beef broth sit in your fridge overnight so the grease hardens and floats to the top, then you can skim it off before using or freezing.
  • Keep an eye on ingredients. Store bought items sometimes change their ingredient list, so always double check. Also if your stomach is bothered by acidic ingredients, keep in mind that many foods have citric acid as a preservative.
  • If fibre causes you a problem, boiling or steaming your vegetables like carrots will soften them and make them easier to digest, but don't over boil or you'll lose all the nutrients. Also, red-meats are more fibrous than others.
  • For your worst days, the following foods are very bland and easy on your system: white rice and pasta, cream of wheat, unseasoned chicken broth with grease removed, cucumber without skin, rice milk, weak caffeine free tea like green or peppermint. And always drink lots of water.



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Wednesday, January 28, 2009

Small Bowel Follow Through Results

Well, a week ago I finally got the results of my Small Bowel Follow Through. Yeah, the one I got months ago! Turns out that Dr. GI had sent it to my surgeon for some feedback and then both offices promptly forgot about me. Since I had been feeling pretty good I wasn't in a big rush to call about it... but I started to run out of 5ASA and so I had to call Dr. GI and make an apt.

So, it turns out I have Crohn's Disease!! No kidding! *laughs* Well, it did again confirm Crohn's in my ileum, and it also showed the abdominal fistula that gave birth to my abscess that started this whole adventure last summer. So, the doctor wanted to confirm with my surgeon that it was the same one. It was. And it's slowly healing up which is good.

I told Dr. GI that I was feeling quite excellent except for some faint pains once in a while. So he said we would hold off on the more powerful drugs like Remicaide and continue with the 5ASA and see if we can learn the pattern that my Crohn's will take. I mentioned my ongoing food sensitivities (half of a bland single-serving cup of canned-pears sent me to the washroom for 3 days when I experimented with them 3 weeks ago). He said it's probably my Crohn's causing the sensitivity or it could be that I have IBS (Irritable Bowel Syndrome) too! Oh no, I thought I had trumped IBS when I was diagnosed with Crohn's! Anyway, I also can't eat anything with a hint of spice or acid or any dairy at all, so he is sending me for a lactose tolerance test in about 2 months.

So, I came out of there feeling pretty happy, but wouldn't you know it... I'm getting stronger-than-faint pains again which is NOT cool. This is exacerbated by the fact that I've been a bit stressed and very sick with the neverending-cold for TWO FREAKIN MONTHS! That's right, even a dose of antibiotics didn't get rid of this horrid infection that seems to fade till I'm almost perfect then comes back at me with a sore throat, or coughing or runny nose. Or all of the above. Yeah, coughing repeatedly doesn't feel so good on the abdomen. I've also been eating risky foods lately as my friends and I celebrated our Christmas last weekend. So... I'm not really helping the situation. Time to smarten up and observe these pains and see what's going on.

So, that's what's new. I've been keeping busy too so that's great. Sick of this snow.

Also I'm still trying to organize an online Chat with fellow IBD sufferers, but you have to contact me if you're interested so I can let you know the info. So far, I only have one person interested (fellow Crohn's blogger Jenni), so let me know if you're interested too otherwise I won't go to the trouble.

Thanks for reading!

Tuesday, January 6, 2009

My Ticking Time Bomb

One of the strange things about having IBD that has been on my mind a lot lately, is that even when you are feeling well, you are always accompanied by a ghost. A ticking time-bomb in your abdomen that could go off any day without warning. A bomb that could hit you with pain, and complications that can side-line your life or put it completely on hold. Complications that can even be life-threatening.

By all estimations, this is not a friendly ghost that provides comic relief and makes for good movies. Instead it's a shadow hovering out of the corner of your eye. A faint twinge in your abdomen today. A few extra trips to the washroom or some unexpected fatigue tomorrow. A gurgle or a whisper of almost-pain. A constant, constant, constant reminder that you are not perfectly well. You're not cured. And more problems are probably coming sooner or later.

No, my time-bomb is not a friendly ghost, but it can be an invisible teacher. It is talking to me every day, whispering and sometimes yelling an all-important lesson: Life is precious. Health is precious. Time is short. Time is our most valuable possession. Make the most of it, right now, while you can. This teacher's message is sometimes a scary one. The worry that I'm wasting my time or running out of time can sometimes be frightening, but I remind myself that I don't have to live a perfect life, just a mindful one. Mindful of my blessings. Mindful of what I'm doing at any given moment. Mindful of what and who is around me. A life lived well is a life appreciated. A life not taken for granted. It means knowing what's important to you- and going for it.

This ghost is never gone it seems, even when I'm feeling great, the faint time-bomb can still be felt deep inside. Perhaps it's a good thing- so I don't forget completely about my Crohn's and I can always be reminded to live in each moment. It sure would be nice though, to have that ghost take a vacation once in a while.