A Major Victory Over Crohn’s Disease

By Julie Kalivretenos July 5, 2010

It’s been a week since the big GREAT news! As I start the day this morning I can still hardly believe this new reality, feeling as if I’ve dropped a 500 pound burden off of my back. I have so much to say I can hardly keep it structured in paragraphs, much less a single blog post!

Over seven years after being diagnosed with Crohn’s disease, the greatest thing that could ever come from the recent tests I’ve undergone this past week is that it is officially in remission! In fact, no Crohn’s was detected whatsoever, it has diminished, vanished, essentially POOFED!

I do have two wee little stomach ulcers, though…but what are mere ulcers? Now that I’ve slayed the dragon, no problem! Piece of cake!

Recent history:

Rewind to about three weeks ago. I was sitting in my family physician’s office reviewing the latest blood work results. I’d just undergone my annual physical, which includes a (more extensive than usual) blood comprehensive, the regular “physical” routine, and some scripts for gastro-related tests. Something worth mentioning here are the other little pieces to the triumph: a vast improvement of my iron, hemoglobin, B-12, and vitamin D levels. They were at [...] continue the story

Real Heroes

By Jenni August 11, 2011

Because I’m on Facebook I have the privilege of becoming “friends” with many others from across the globe who suffer from Crohn’s disease and other related stomach illnesses. Among us we share status updates and become members of groups all relating to how our illness affects our lives. It is interesting to see how so many people with the same basic issues deal with it in many different ways. It is also sad to see that most of them, if not all of them, also suffer other illness along with Crohn’s. I have noticed a trend. Now this is in now way scientifically proven by any means so don’t think there has been clinical trials and real research done here, but this is what I have seen. A great majority of Crohn’s sufferers also experience kidney issues ie: stones, infections and pain. At least two of my new women Crohn’s friends have recently been diagnosed with ovarian cancer. Nearly all of us suffer from some form of arthritis ie: rheumatoid, osteoarthritis, or general arthritis and joint pain. Depression, bipolar, anxiety and insomnia also top the list. I’m [...] continue the story

Too Much Information

May 15, 2011

Do you ever forget where the “Too much information” line is? I spend so much time around other Crohnies, close friends and family that I forget what is acceptable in everyday conversation. The regular guy in the street doesn’t really want to know about my bowel movements.

When someone asks me a question with regards to Crohn’s, I plough straight in. Quite often describing many of the symptoms, side effects and affected areas of my body. I don’t seem to blush with embarrassment anymore. Does this mean I’m comfortable talking about bums? When I meet new people I seem to find myself talking about my ailments, whether they want to hear them or not. I was once a shy and restrained boy and now I am upfront and open.

My wife gets fed up with how much I talk to strangers but I don’t seem to be able to stop myself. Up until being diagnosed, I had never heard of the condition, so now I find myself wanting to make everyone aware.

I obviously keep some of the “juicy” details to myself as they are not for the faint hearted. I hide these details from most people as I do like [...] continue the story

Anemic Enigma & Cardio Bunnies

By Julie Devaney

“When she called me last night with the blood results she had a grave tone of voice. I was approaching my best friend’s house on a country road a couple hours northwest of Toronto. Even though I was expecting the call, the whole getting-medical-results-on-speakerphone thing was slightly creepy,

“Hi Julie, how are you feeling?”

They only ask this when something’s up. But I’m seriously bored with medical drama so I didn’t bite,

“Great! How are you?”

“Um, I’m fine. But your results aren’t good.”

“Ok, so what’s my hemoglobin?”

She gave me the number and asked, “”Can you come in tomorrow?” adding, “You really should’ve come in a lot sooner.”

Blah blah BLAH. Definitely not the news I wanted.

Now it’s tomorrow and I’m sitting here with my IV. It’s both concerning and not, at the same time. And I can’t decide whether I feel more vindicated or irritated.

2004 I had my third and final bowel surgery, and by 2005 I needed regular blood transfusions because for some reason my body just gave up all responsibility for storing and producing iron. Many many many tests and specialists later, with heavy speculation about other autoimmune disorders and possible cancers nobody ever figured out why.

As the nurse who [...] continue the story

How Remicade Infusion Pow-Wows Are Empowering Patients

Crohn’s and Colitis are isolating conditions. Because they are invisible illnesses, it’s impossible for a patient to walk down the street and identify another. As a result, we patients are disconnected from each other by default. To be connected to other patients, it takes conscious effort.

Friendships in real life are created by people being put into situations that allow them ample time to get to know others socially — for example, you meet someone at work, at school, or at a party.

Patients with Crohn’s & Colitis don’t have a natural setting for this sort of socialization. As a result, becoming close friends with other patients has to be a result of a created situation. It requires looking for others online or it requires setting up getting coffee with that cousin of your parent’s friend’s friend who you were told through the grapevine has Colitis. The truth is most patients don’t do it. It’s too much work, the odds that you will really connect with that person are too low, and the benefit is too amorphous.

What I’m saying is that Remicade, an intravenous medication for IBD, changes all of this. It takes disconnected and isolated patients and builds connection and empowerment [...] continue the story