My Immune-System Kicks Ass!!!

Sometimes I feel like such a wimp.  And not just in the “I feel like a victim of my disease” kind of way.  No, right now I’m looking at the bigger picture, about being a wimp in the evolutionary sense: In the world where the fittest survive, I’m a vulture’s potential meal.  Sure, we now have medicines that keep people like me alive and healthy-ish.  But sometimes I wonder…if I came from a pre-antibiotic world- would I still be alive? 

For the most part I feel that this really doesn’t matter.  I am not in that world but rather in a new world fighting it out with different armor.  But there is a small part of me that for some reason likes to think that I would have stood a chance back then.  I can’t be the only one who thinks about this- isn’t this the whole premise of the show “Survivor”?

Fortunately, there’s the hygiene hypothesis that cheers me up and reminds me that I am not necessarily part of a group of people with a genetic mutation that makes me vulnerable to sickness and death.  No!  Instead, it’s possible that I have a really kick-ass immune system!  That in fact, I may come from some elite group that would have had some advantage!  I don’t have a “faulty” immune-system, it’s just that it’s totally trigger-happy and I’m the only one it’s shooting at. 

I have been guilty of looking upon people with severe allergies as the “fragile” ones in our world.  One speck of something as harmless as a peanut could be their demise.  If the hygiene-hypothesis is true, however, the ones we see as fragile today may have been the ones who would have avoided sickness and outlived others back in a germ-infested world.   And apparently, it’s not just invading germs that were staved off, the immune-system is in fact able to recognize unusual cells.  I have heard that people with allergies are less likely to develop cancer since their immune systems are hyper-sensitive to any abnormalities within the body.  So, the next time anyone ever complains about our peanut-free schools, blame the lack of germs, not the child.

I will probably turn down any offers to join next season’s cast of Survivor, mainly because I don’t think I’d be great at forming alliances and then back-stabbing my so-called friends.  But based on the hygiene hypothesis, I can now imagine that if I travelled back in time to some ancient civilization, it wouldn’t be the germs but rather the saber-toothed lion that would do me in.

http://www.sciencedaily.com/releases/2013/03/130322104255.htm 

http://well.blogs.nytimes.com/2011/07/18/really-the-claim-allergies-reduce-the-risk-of-cancer/

The Prednisone Monster

In a past blog post, I compared prednisone to a badass boyfriend that I just keep going back to.  When I am not on prednisone, I do whatever it takes to not get back on it, but then eventually, I have to give in.  Starting prednisone again feels amazing in so many ways.  It starts working within hours and eases the inflammation and a surge of energy wakes up the rest of the body that has been so drained.

Though prednisone is still very much part of my life, the badass boyfriend, fortunately is not.  Instead I have a wonderful, supportive husband who is a positive force in my life.  While he is happy to see my health improve on prednisone, he is not happy with the "new me".  Natalie on prednisone is argumentative, super-sensitive and highly emotional.  He hates it but puts up with it.

At times, I feel very disturbed by the fact that others notice a difference in my personality.  I can remember an old boyfriend being very turned off by me and saying, "you're like an animal!".  Or when I do get upset about something, and my husband points out that I am reacting this way because of the prednisone.  This bothers me because I feel like my words and feelings are given less importance.  It's comparable to an emotional woman being referred to as "on the rag" or PMSing.

Emotion is real and it comes from somewhere.  It is not swallowed within those little white pills.  I like to think that prednisone gives me the opportunity to stand up for myself a little more and address issues rather than ignore them.

It's very strange to think that a medication can alter your personality so much, or that we are so controlled by our hormones.  Prednisone is a steroid drug which, from what I understand, causes more testosterone in your system which accounts for many of the physical and emotional changes in your body.  I like to think the prednisone just makes me a little more macho.  It's still me, just me with balls!

Laughing My Way Through "P"ooster Park

I've had a bad week.  I started to describe my distress in a post but I just got grumpy and introverted and it reflected in my writing.  What I really need now is a good laugh so I thought I would write about my  adventure last month in Oosterpark, Amsterdam.

I don't have an easy time laughing about Crohn's Disease.  I applaud and admire people who use humour to deal with adversity in their lives and I do find shit humour pretty funny when done in a original way.  Unfortunately, when it comes to my embarrassing and disgusting situations, I am more likely to feel shame and victimized by my disease.  But when something embarrassing happens when you're with a seven-year-old, there's not much you can do but laugh!

As many people with chronic conditions will say, traveling can cause distress in your body and symptoms that had not been there before your departure will be there to meet you upon your arrival.  The symptom that met me in Amsterdam last month was URGENCY!  Though some people complain that Europe is terrible for public washrooms, I fortunately have a sixth sense when it comes to finding the best and/or FREE of charge bathroom within a block range.  For most of the week I was doing well  and avoided any disasters.  Until one night, after an evening with friends dining on lamb curry, drinking red wine and licking the plate of my rich chocolate cake, it was time to go home.  It was a beautiful night when I walked with my family through Ooster Park heading toward our apartment.  I got that feeling in my gut that said, "you don't have much time...", I thought at first that I could make it out of the park but then the feeling got a lot stronger, a lot sooner than usual... I knew I wasn't going to make it out of the park.  As I crossed the bridge, I made a rash decision... I jumped in the bushes and let it go!  Within seconds, I popped right back up and instead of being humiliated, I walked the rest of the way through the park laughing hysterically about the whole ordeal with my son and husband.

The next day, we were still laughing about it with my friend, our host from the night before.  I said it was a sign of a really good meal. She joked that my husband should have picked it up in a plastic bag and disposed of it in the dog poop bins.

We decided that from now on, the park will be known to us as "P"Ooster Park, the park where I marked my territory.

Patience, Patient!

I am trying to be patient.  My gut is needing some attention.  I tried to be proactive and ensure that all my blood work was up to date so that if my symptoms worsened help was just a phone call to my doctor and a fax to my pharmacist away.   But as usual in the medical system, it's not working so smoothly.  I contacted the nurse who works with my doctor and she called me back after two days and told me that my doctor is on vacation at the moment and upon his return next week she would ask him to look at my file and let me know his decision.  That was last week.  It is now Thursday evening and I haven't heard from her.  I've been reluctant to call her back since her voicemail message says, "please leave me ONLY ONE message, I will get back to you".  It is so hard to know when it is time to be pushy and fight for yourself and your needs and when you should just wait.  Is patience a virtue or is it a means of delaying treatment and allowing symptoms to worsen?

Fooled by the Snake Oil Salesman

The other day, I received a package in the mail! Despite the fact that I had placed the order for this package and that I knew that the box contained six bottles of water, I was still excited. These bottles of water are not plain water from the tap (I really hope they arent’) but are actually ‘fractionally distilled aloe vera juice’. Aloe vera juice is meant to contain a powerful natural anti-inflammatory which I believe could benefit my gut. A side-effect of drinking plain aloe vera juice is diarrhea which is what many of us with IBD are trying to avoid. This aloe vera juice, however, is meant to be more tolerable because the diarrhea-inducing agents have been removed while all the anti-inflammatory properties are maintained. The aloe vera juice is really easy to swallow, since it tastes just like water!

I like to think that I am someone who is not so easily fooled but when it comes to my health I really want to BELIEVE! As I pour my aloe water into a cup at night before bed, my husband gives me a smirk that means, “You know you have spent a fortune on water, right?”. He’s tasted and confirmed that it is just water. Ohhh, but the company addresses this on their website:

Q. Doesn’t distillation just turn it to water? 
A. Georges is fractionally distilled, meaning it is broken down into various parts, with the undesirable elements removed. It is then re-assembled. Products such as Jack Daniels & Petroleum are distilled products and would never be confused with water.

See, there you have it, it’s not just water, right? Well, it’s what I want to believe for now.

What everyone, even the best intentioned in the health industry know is that when we are sick most of us will do and pay almost anything to get better. Sometimes we know we’re being duped but it takes us time and money to admit it to ourselves. One time, I went to see this supposedly wonderful homeopath who told me that we would get to the bottom of this problem (my disease) and I would be feeling better soon. I left her office feeling like I was in good hands… until I got to the receptionist who handed me a bill of $600 for the first visit, the remedies, and the lab tests. The lab tests came up with nothing, and the remedies didn’t work but the homeopath told me that through weekly telephone appointments we would find the right one. After three telephone appointments (all billed of course) I suddenly realized that something seemed wrong. Each week she was recommending a new remedy and I was running out and getting it, spending more money, and paying her fee each time. Eventually, I told her that since I was not seeing any progress, I was done. Though some may think I was paying an honest price for a professional service, I really felt that despite any good intentions she might have had, this homeopath was exploiting my vulnerability and wishes for health.

I feel I should invest a little money trying new products, especially if they are suggested by a reliable source. Though knowing who is a reliable source is not easy, I can at least say that I am far less trustful than I used to be. Today, I feel comfortable with my decision to try the aloe water, though I know I may laugh at myself further down the road, knowing I’d been duped again.

Glamour Guts Is Here!

A major part of healing when you have a chronic disease is getting over the stigma and isolation attached to your illness. In the past I really felt that other people with Crohn's Disease were not like me, I had no desire to reach out to anyone. I always felt that communicating with others about my disease would mean putting myself in a victim role and that didn't appeal to me. In truth, I was in that victim role every day but putting on a brave face in public. Here is a movie about Inflammatory Bowel Disease that was very inspiring to me. When I saw this film, I realized that I could open up about my disease in fun and creative ways, and maybe even have sense of humour about it.

Glamour Guts is a 3 minute silent film by fellow Canadian Jasmin Oore about living a glamourous life with intestinal disease. I was shown this movie a couple of years ago when my friend Dana was at my house and she told me about her friend's friend who made a movie about Crohn's Disease that won an award for a CBC short film contest. I laughed so hard watching it; all the pain and embarrassment that I had felt over the years was suddenly so hilarious! We were able to find it online at that time since it was on the CBC website but when I first launched this blog it was no longer available. Until now! Jasmin has put it on youtube so that we can all have a good laugh about living with with IBD... Enjoy!

http://www.youtube.com/watch?v=q2skg1f4HAM

Inflamed and Inflated- being pregnant with Crohn's Disease

I've got a fierce competition going on in my belly. My Crohn's Disease, as usual, is demanding lots of space and attention but now I also have a little baby there who is pushing and kicking and is definitely letting me know he's there. This is my second pregnancy but my first time with active Crohn's Disease. With my first, I was so adamant about following all the expert advice and keeping my body as "pure" as possible so that the baby could grow in a non-toxic environment. Well, if my son really benefited from growing this chemical-free environment then this new baby is certainly getting the short end of the stick. I am now taking Imuran and some prednisone to keep the inflammation down. Both these drugs are deemed safe during pregnancy by my doctors. When I went to pick up my first prescription of Imuran, I caught the pharmacist staring at my pregnant belly, looking concerned. As she explained how to take the medication, she told me that no one else should touch the pills as they can be very toxic. When I came home from the pharmacy, I broke down crying.

In her book, Listen to Your Gut, Jini Patel argues that one should control their Crohn's Disease using an elemental diet (consisting of her Absorb Plus Powder) and even during pregancy she thinks that it is better deprive the baby of some nutrients than to expose the baby to prednisone. I'll admit that I too was thinking in the early stages of my pregnancy that it would be better for the baby to be in a chemical-free environment, even if it meant that my Crohn's might act up. But when I went to see my doctor after having a blood test, he told me that I was not absorbing enough protein and this is not healthy for a pregnancy. At this point, I just made the decision that I would give myself over to the professionals and do whatever they said.

http://ventedspleen.com/blog/category/comics/crohns-comic/