Today, the Crohn’s & Colitis Foundation of America released its “Challenges in IBD Research” report outlining what’s been accomplished in the field of research over the past five years and what they hope to accomplish in the future. The last report was released in 2008 and since then, lots has been accomplished in the field of research.
The previous report detailed findings from 2004-2008, including the identification of genes for IBD; a better understanding of the relationship between the immune system and gut bacteria; the discovery of cells that drive and regulate immune responses; and a better understanding of how the immune system keeps stability in the lining of the gut. All of the below information has been pulled from the study’s Lay Summary.
Today’s post comes from Brian Greenberg, the man behind the Intense Intestine’s Foundation. Brian has battled Crohn’s disease for years and, two-and-a-half years ago, became an ostomate. Despite having an ileostomy, Brian refuses to let his disease get in the way of his love for the outdoors and life. Below he talks about the internal struggle many patients go through prior to getting an ostomy.
It’s often hard to like pictures of ourselves– post your favorite picture of yourself.
I know I’m not supposed to use words to go with this but just want to give context to the photo- this was taken in 2009 at our wedding.
I am WAY behind in this challenge so I will be playing catch up in the next few posts but I wanted to begin by responding to today’s prompt.
As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?
I need to begin this response by saying that I am neither a parent with a health condition nor the parent to a child with it. I am the wife to a spouse with Crohn’s disease. Being his caregiver is a full-time job in addition to my actual full-time job.
Being a caregiver isn’t easy- it means putting the needs of your significant other or child before your own. It means dropping what you are doing to help them, whether it means going to a doctor’s appointment with them and going to work late or getting woken up at 3 A.M. to go to the emergency room. It means keeping track of someone else’s schedule in addition to your own. It means, sometimes, cooking special food targeted to your loved one’s dietary needs which differ from your own.
So what do I hope I’m doing right? I hope I am advocating for his best interests when it comes to treatment the right way.
As someone with a very outgoing, sometimes abrasive, personality, it’s easy for me to stand up for my husband when it comes to his treatment. I’m not afraid to ask questions at his doctor’s appointments to make sure he is getting the best care possible. I’m not afraid to annoy the nurses while he is hospitalized if he needs something and hasn’t received it.
Sometimes, I feel like I am overdoing it by not allowing him to have his own voice. I try very hard to make sure there is a balance in which Dan is able to advocate for himself and discuss his concerns and I can voice my concerns. However, there are definitely times where I am overpowering and Dan definitely just defers to me. His doctor often laughs at me because I’ll answer her questions before he can. I can also recite the dates of his hospitalizations, surgery, when he was diagnosed, and when he started Remicade by heart and respond to those inquiries without skipping a beat.
While I may be overdoing it, it’s just out of love. As a caregiver, I want to make sure Dan is receiving the best treatment possible. If I come off as intense or rude, I’m sorry but that’s just who I am and how I get things done.
“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible? What’s your one, three, or five year plan for your Health Activism?
Man is this a hard one to answer! There are a lot of things that I wish I could do as a Health Activist yet aren’t possible due to my expertise/full time job. So if these weren’t barriers, where are the top three things that I’d like to do as a Health Activist:
- Become a Professional Patient Advocate: I know this sounds funny since we are all advocates in our own way but there are programs out there that allow you to become a certified Patient Advocate. If time/money/etc. were no problem, I would want to become one. Over the past six years, I’ve seen how advocating for Dan has really improved his quality of care. Unfortunately, not everyone has someone who is comfortable speaking up for them. I think I could be a great patient advocate for those who need ones to help ensure that they understand their disease, their treatment plan, and their rights.
- Destigmatize Inflammatory Bowel Disease: It’s unfortunate, but there are many stigmas associated with Crohn’s disease and ulcerative colitis. In fact, according to a Live Science article, IBD is the 6th most stigmatized disease. Some IBD patients are embarrassed to talk about diarrhea and abnormal bowel movements with their doctors, friends and family. In 2000, Katie Couric tackled the stigma surrounding colon cancer, another bowel ailment, by televising her colonoscopy. This allowed people around the country to see that there is no shame in having a bowel disease and that talking about having an invisible illness encourages people to seek medical care. I’d like to find a way to encourage IBD patients around the country to talk about their diseases- tell a friend, a loved one, a coworker, whoever- to show that they are not ashamed and that they will not allow the disease to cause them to feel bad about themselves. I would do this through a public service campaign similar to CCFA’s Escape the Stall and have famous people with Crohn’s and ulcerative colitis, like Shannon Doherty, Ken Baumann, Cynthia McFadden, Mike McCready and others film PSAs that would air nationwide talking about IBD in full details to raise awareness and destigmatize the illnesses.
- Write a children’s book explaining IBD: More and more children are being diagnosed with inflammatory bowel disease now than ever. As a young child, it’s really hard to grasp the concept of having a disease and coping with the mental and physical effects of the illness. I would like to write a children’s book explaining what IBD is, how it’s treated, what it’s like to live with it, and most importantly, reassure them that IBD does not mean that they have to stop living- they can continue having fun and enjoying their childhood. There are lots of books for children with cancer and other diseases, so I’d really like to write one for children with IBD.
Are you Jewish? Have you ever been to Israel on an organized trip?
Well I’ve got some awesome news for you!
Amazing Israel, a division of Jerusalem-based Routes Travel, is organizing a FREE Birthright Israel trip for people ages 18-26 who have inflammatory bowel disease.
If you have IBD, you know how stressful traveling can be. This trip is made to accommodate the needs of those with IBD while not missing out on any of the sights- the Old City and Western Wall in Jerusalem, Independence Hall in Tel Aviv, the Sea of Galilee and Golan Heights, Masada, the Dead Sea, the Negev Desert, and Mediterranean beaches.
To qualify for the trip you need to be Jewish, going to Israel on an organized trip for the first time, between 18 and 26 and have a doctor’s note or other medical proof of your IBD.
For more information, visit Amazing Israel online or contact Rachel Nissim at firstname.lastname@example.org.
Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!
This is definitely an interesting post for me to write. When Dan was first diagnosed six years ago, I didn’t look for resources- I was just his girlfriend and the bulk of his care wasn’t going to be my responsibility. I lackadaisically went about caring for him and just assumed that how he was feeling was normal for the diseases. Of course I was wrong and, in retrospect, I probably should have taken the initiative to look at resources and different things I could do to help him cope with the disease.
That being said, here is a list of the best resources that have helped me in the three and a half years that we’ve been married: