Thursday, October 23, 2008

Crohn's & Colitis Foundation Fundraiser!

Today I am launching a fundraiser for the Crohn's & Colitis foundations of Canada and America. I have created a web page all about it, and I'm hoping to meet a target of $3,000. So, all you readers and sufferers out there, if you were thinking of donating... or maybe you just have some early Christmas giving spirit bubbling up... please join my little group fundraising effort. It is all through the secure donation pages on the CCF websites- so no worries, the money will not be going to me, some anonymous blogger! Thanks so much! Bloggers Unite!

Monday, October 20, 2008

Crohn's Tips - Part 1: Introduction

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

I've been living with Crohn's for many years, but only recently received an official diagnosis. When that happened, the first thing I did was try and hunt down some books which would provide helpful advice for dealing with Crohn's disease. So far I've found several books with medical information including treatments, as well as a few recipe books. But I haven't found much information on dealing with the day-to-day living with Crohn's that so many of us are facing. So, I thought I would share some of the things I've learned so far, here on my blog.

Knowing Yourself

It seems to me, that the first step to helping yourself, is to know yourself. Really know. That means recognizing your positive attributes and your negative ones. It means seeing how you live your life- what's important to you, and what is maybe being neglected. From what I've seen in myself and other people, including what I've read... there tends to be 4 main categories under which our various activities can be grouped. These are the often mentioned: physical, intellectual, emotional and spiritual. I've noticed that each person gives more or less attention and focus to certian groups over others. The great thing is that this is what makes us all unique- none of these groups are better than the others.

For example, my brother is definitely physically focused. He's a personal trainer and the condition of his body is very important to him. He enjoys exercise, is very careful about what he puts in his body and he always dresses very well. He loves to learn about nutrition, fitness and health. He's very knowledgeable about these topics and his career as a personal trainer is perfect for him. This area is what makes him happy.

On the other hand, I definitely put my intellectual side first. I read a lot and love to learn. I'm drawn toward activities that are interesting or informative. I tend to fill my spare time with activities that are mentally stimulating or interesting: like reading, and various projects. My most neglected side is physical. While I'm thin... I consider myself to be a bit out of shape - no endurance at all. Every time I try to start a new workout plan, I lose interest.

I imagine people live their lives with their various focuses in a sort of diamond shape. At the top is your primary focus, at the bottom is the least one and the two others are somewhat even around the middle. Or maybe one is higher than the other. Mine looks kind of like this:

This diagram also gives some points that fall under each category to give you more of an idea of how I imagine the categories are split up. Your diamond might be a totally different shape- you might have two primary focuses. It doesn't even have to look like a diamond.

The point of all this... if you're still with me... is to make sure that you are giving all four areas of your life some attention. For example, I almost always neglect my physical side, and my emotional side sometimes gets short changed. For example when I get so caught up in my own projects and busyness that I haven't seen my friends in a while. What I'm trying to say is that while various areas of your life may be more important to you, and may receive most of your attention... you must take care of all these aspects of yourself to be happy and healthy. Crohn's disease, or any chronic illness can affect all these areas of our lives, and we can sometimes become so focused on our disease, that the areas of our lives that were already at the bottom of the totem pole are neglected even more.

While my recent battles with Crohn's have brought me closer to my friends and loved ones, giving my emotional side a new increase in attention, my physical side is still left out in the cold. Which is why I'm starting a very light new work out routine consisting mainly of stretches and very light exercise just to get me moving again. I'm also planning on checking in with my family doctor to get some blood work to check my nutrient levels, and to also see a dietitian soon.

At the same time, I've been very focused on my slowly healing surgical wound, and my various Prednisone induced side effects... so physical problems have really been occupying my mind. With a chronic illness, we need to be very careful to find a balance between taking care of ourselves physically, and not becoming overly obsessed or depressed about our physical troubles or difficulties. When you're in pain or running to the washroom a dozen times a day, it can be frighteningly hard to think about anything else- but the key is to do it in small steps.

My future posts in this series will contain some tips grouped under each of the 4 categories I've discussed. Thanks for reading, and in the meantime... take a moment to think about the areas of your life diamond- write it down. What's important to you? What gets neglected? What do you enjoy and what do you avoid? Where do you know you want to improve? The answers to these questions are different for each person. My next posts will have tips related to Crohn's in each category, to help you manage this disease- so that you can get past having your life on pause due to Crohn's and you can instead give at least some of your attention to the rest of your life- and finding the right balance.

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Tuesday, October 14, 2008

Book Review: Coping With Crohn's by Sonia Glover

I just finished the short book: Coping With Crohn's by Sonia Glover. I bought it hoping it would have some practical advice on dealing with the emotional aspects of my diagnosis and maybe some lifestyle tips. Unfortunately this book was not really about helping the reader cope with Crohn's. Instead it is the story of the author's struggle with Crohn's, and while it is indeed an emotional and stirring story, it is not really what I was looking for. It reads more like a big long journal entry and while it does describe the tests and doctor hoop-jumping she went through... her actual method of coping seems to consist of struggling to go to work despite horrendous pain and running herself ragged, eating foods she was told not to, and on a positive note- receiving lots of support and comfort from her family. The only real tips in the book are the importance of going to your loved ones for support when you need it (don't be afraid to ask for help), and if you fail to get a diagnosis at one doctor- keep on trying.

I don't mean to knock the book- it was a good read. However it was a bit sad, and did not have the practical advice I was craving. Honestly, I think I could write a better guide to coping with Crohn's myself, and I'm toying with the idea of writing a short e-book and giving it away for free. Let me know what you think folks.

Interested in this book?

Friday, October 10, 2008

My Crohn's Status Update for October 2008

I've read posts by other Crohn's bloggers about how they are feeling and what they are going through, and they are often tales of mind boggling pain and dozens of trips to the washroom. I'm so fortunate not to be having those particular problems, but rather am dealing with other 'fun' issues, so I figured that it would be worthwhile to write about my current situation.

It's about 7 weeks since my surgery to have an abscess which formed around a perforation (fistula) in my small bowel drained. The 5.5 cm abscess was drained, I was put on antibiotics for a couple weeks (done now) and my now empty abscess hole was packed with gauze and I was discharged under the care of a home nursing agency. Thank god the government pays for this service! Over the last 7 weeks, the wound has been packed with a smaller and smaller amount of gauze, Silvercell, Iodosorb and various other cool products which fight infection and promote healing. I'm also now applying for a new product called Prisma that contains collagen. Anyway, what once was a large wound into which about 2 feet of gauze was packed... is now a 1.5 cm deep hole as narrow as a tooth pick. Needless to say, packing this narrow hole is rather painful, but it's necessary to ensure it heals from the inside out. Luckily I'm down to having a nurse come only 3 times per week. Thanks to Iodosorb which fights infection and lets me keep the same gauze in there longer. Keeping a wound warm, moist, and un-bothered is the best way to help it heal. Frequent fussing is not good. It also allows me to go in to the office to work on days I don't have a nurse (I work from home on the days a nurse does come). Thankfully I've been able to continue to work full time.

While my wound is slowly healing... it still requires me to have a good size bandage on my abdomen which collects the blood and other oozing fluids. I'm struggling with the fact that this makes me feel hugely unattractive. Sometimes it even smells like stew for some reason (no, I don't eat stew), which compounds this problem 100-fold. I'm sure my wonderful boyfriend is noticing that I've been more distant, but I find it nearly impossible to feel attractive and affectionate with a big stinky bandage on my stomach covering a sore, gauze filled wound. I don't know what I would do if I ever needed an ileostomy or those other nightmarish procedures. That is my absolute biggest fear at this point. I try to think of it as being better than suffering pain or even dying... but it's still a horrible fear.

To make matters worse, my relationship is still on the new side... so I feel horrible that I can't be my normal outgoing, upbeat, and affectionate self. Especially since he's been so supportive and positive about this whole ordeal, and seems totally ok with having a Crohn's-y girlfriend. I feel like I'm just putting my life on hold, waiting for the wound to heal so I can move on with my life, the further medical tests I need, and the treatments my doctor wants to try. It's all riding on this wound, so it's become a hated nemesis. I just wish I knew if there was still any stool present in the drainage, like there was at first. Then I could at least know that the fistula had healed. But now with the blood, the brown Iodosorb and the yellowish natural wound fluids, it's too hard to tell if there's any stool present. Maybe that's the stew smell? I don't think so however, and my nurses say it looks good and that if there is any stool, it's a minuscule amount. So I guess that's good.

Besides my wound troubles, I'm still fighting with the side effects of the Prednisone despite having been off it for a few weeks now. My hair is still falling out in alarming amounts, I've got extra acne and fuzz on my cheeks. Not cool. So if I'm feeling unattractive- you can understand why. I'm obsessively wondering when these things will go away and if they will at all. Will my hair thicken back up? Will the peach-fuzz fall out or do I have to wax it out? Etc. It's maddening.

I've also been making a few trips to the washroom each day. Mild diarrhea has returned, but nothing like that described by other Crohn's sufferers. But enough so that it makes me dread having to use the restroom at someone else's house. Luckily it's about the same as it has been for the last 7 years of my life, so I'm not too put out by it.

Luckily my pain level has been about a 1 to 3 out of 10. So that's pretty darn good. I think most of the pain is coming from the wound and not the internal Crohn's thankfully. So pain is not a very big issue for me, but tiredness is. I've always had a problem with going to bed early enough. I tend to get deep into a book or something that makes me lose track of time. So, even though my recovery requires EXTRA sleep, I'm still probably not even getting enough for a normal situation. Part of my plans for the short term is to get to bed earlier. I'm yawning way too much.

Overall I think I've been feeling pretty good physically. It's the emotional things I'm struggling with. Feeling kind of ugly, and not knowing what my future holds with this disease are particularly hard. Luckily when I get too sad about it, I can look on the Bright Side at all the things I have to be thankful for, and that helps turn my mood around. From reading other blogs I also know that it could be much, much worse... so I'm thankful it's not.

Crohn's is hard, both physically and emotionally, but when I read stories of other sufferers, I am always inspired by their courage and determination. It's partly because of that inspiration as well as from a desire to be proactive and help find a cure... that I'm going to be organizing a fundraiser shortly. It will go through the official CCFC and CCFA websites, but I'm going to collect a tally of the donations that people make. I am setting up a web page all about it, and a form people can use to tell me about their donation so it can be added to the tally. Once I have this ready, I'll post it here. So if you're planning on making a donation soon... just hold off and you can join my little group donating event! Stay tuned!

And to everyone reading my blog- thanks for visiting- and stay tough! Your comments and messages mean a lot- thanks!

Tuesday, October 7, 2008

Silent Sufferers

I recently started reading a book: Coping With Crohn's by Sonia Glover. Her story is a tough one, and her years of suffering without a diagnosis made me think of the people around me. A shocking percent of my female friends and family members are suffering with some kind of undiagnosed 'stomach problems'. Of my four close girl friends, one besides me also has Crohn's, and two others have stomach issues, one of which has MAJOR problems. One of my male friends has a sister with issues, and my own sister in law is suffering with IBS-like symptoms of her own. It's heart breaking to see the people I care about most suffering in silence.

Most of them have been to a doctor multiple times. In some cases the test showed up clean, in other cases they refused to go for the more unpleasant tests. Reminds me of myself a few years ago. While I'm feeling fairly good, and getting the treatments I need, my friends are suffering on and off without answers. So, I've put together a list of tips and things to tell your doctor about to help get a diagnosis.

• Go for all the tests your doctor needs. They aren't so bad- even the dreaded colonoscopy is a big nothing- I was knocked out the whole time. This is so important- these tests are the only way to get a firm diagnosis.

• Keep a symptom journal. Record everything you eat, your fatigue level, stress level, pain level, bowel movements and a description of them. In all the gross detail you can manage.

• Tell your doctor about how long you've been experiencing these symptoms -to rule out short term causes like the flu or food poisoning.

• Describe any other problems you may be having even if you think they are unrelated. Examples are: skin rashes, joint pain, muscle pain, headaches, dizziness, fatigue, trouble concentrating, etc.

• Describe your pain on a level of 1 to 10. One being barely noticeable, and 10 being the worst pain you've ever experienced in your life.

• Tell the doctor about all medications and vitamins or natural remedies you are taking.

• Insist that your doctor be proactive in sending you for tests and trying treatments. Don't let the doctor send you home feeling like you are just doing this to yourself with stress, or that it's a natural part of life, or that there is no answer. Get a second or third opinion if necessary.

Suffering in silence is no way to live. Our medical system, especially in Canada is open to everyone and despite occasional wait times, the quality of care is excellent. Even if you are diagnosed with a disease like Crohn's that has no cure, there are still a large number of therapies and treatments that can greatly improve your quality of life. Don't be afraid to stand up and demand the help you deserve.