Great pain and expectations

November 30, 2011

Being involved in the Twitter community and following numerous others with Crohn’s and like belly troubles I have realized I am not alone when it comes to pain and the great expectations that goes along with having a chronic illness.

I have pain every day. My body hurts. My joints hurt. My belly hurts. My nether regions hurt from going to the bathroom ALL the time. Every now and then I am lucky enough to get my hands on some pain medication which, more often than not, doesn’t really do much to relieve the pain anyway. So sometimes I, like others with Crohn’s, have to go to the ER to get some heavy duty drugs to get a little relief. This isn’t usually met with kindness from the ER staff though. I know I personally have been labeled as “narcotic seeking” for an occurrence when my very own Dr. GI sent me there for pain management. Since three of the four major hospitals share electronic records in my area I am pretty screwed out of going to the ER for pain management now. I am usually immediately told there is nothing they can do for me. And if they [...] continue the story

Epatient interview: The diabetes community in Europe

Anne Seubert speaks about using social media in Europe to get more information about her type 1 diabetes.

Anne Seubert September 15, 2011

On becoming a “patient-like-me” in Europe

Àngel talks about his diagnosis with a rare disease and how social media helped him cope.

Angel Gonzalez September 17, 2011

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

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