Posts tagged ‘ibd’
Money Matters
Anyone with a disease knows just how expensive it is to live with a chronic illness. The medications, doctors appointments, surgeries, emergency room visits, and everything in between- it all adds up over time. In fact, I just went back through our records and since we got married in 2009, give or take a bit, we have spent over $4,000 out of pocket on Crohn’s related expenses.
I feel unbelievably lucky that Dan and I have health insurance because of the high medical costs associated with Crohn’s Disease. Every six weeks, Dan goes to his doctor’s office to get his Remicade infusion. So every six weeks, we pay a Remicade copay. We also pay for parking at his doctor’s office, wear and tear on the car (its a 60 mile round trip from our house to his doctor and back), gas, copay for check ups every four to six months, and for other small procedures periodically (bone density scans, colonoscopies, CT scans, etc.).
The ABC’s of Crohn’s Disease & UC: “B”
Here is the second installment of the ABC’s of Crohn’s Disease and UC. Surprisingly, I didn’t find many B’s associated with the disease (aside from some obvious ones). Let me know if you know of any others that should be added to the list!
Jennifer Jaff, Patient Advocate, Passes Away
I am a little late in posting but last week, a great advocate for chronically ill patients passed away from complications with her Crohn’s Disease. Jennifer Jaff, 55, was executive director of Advocacy for Patients. She was first diagnosed with Crohn’s when she was 19. She had eight operations to treat her disease and during one 12-year-period gained 120 pounds while on steroids.
Ken Baumann (Ben on Secret Life of the American Teenager) talks about his Crohn’s Disease battle
Ken Baumann (Ben on Secret Life of the American Teenager) talks about his Crohn’s Disease battle
Here piggy, piggy (parasites part 2)
So remember how I wrote recently about a new study to see if swallowing pig whipworm eggs would treat Crohn’s Disease? Well apparently this isn’t a new treatment- there is someone who has been swallowing these little critters for eight years already!
Herbert Smith, a 33-year-old Crohn’s patient, swallowed thousands of whipworm eggs suspended in a liquid solution over an eight year period. But after ingesting 2,500 of them in the first three months, most of his Crohn’s symptoms disappeared. Unbelievable!
There’s an app for that!
Sorry for the lack of posts recently- I was on a family trip to Ohio and didn’t have much time for blogging. But I am back and with lots of ideas for new entries.
PS- if you haven’t done so already, please like Caring for Crohn’s on Facebook and follow me on Twitter @caringforcrohns!
That brings us to today’s entry- iPhone apps for Crohn’s and UC patients!
I was reading an article recently about all types of apps for IBD patients- from restroom locators to symptom diaries to some funny ones also. There are tons out there and they are definitely useful for those out there who are living with these diseases on a daily basis.
Work & Chronic Illness
Yesterday, an interesting question was posed on a Facebook group that I am part of- when to disclose to an employer that you have a chronic illness. Majority of those who responded said that they disclosed their illness right off the bat- one even as early as in the interview.
I understand the benefits of disclosing that information right off the bat- it gets it out there so that if something happens and you need to take time off, they already know why and are more accommodating.
Article on Huffington Post about Crohn’s
I am SO excited to share with you all that a blog post I’ve been working on for a bit about taking care of a loved one with Crohn’s has been posted on HuffingtonPost.com!
I wrote about the complications Dan has had over the years and the various hospitalizations and how important it is to understand what is going on so that you are able to make informed decisions.
Here’s a snippet of the piece:
“Unfortunately, this wasn’t the first emergency hospitalization that I went through with my husband or the first one where I feared for his life. One year earlier, following a routine colonoscopy, my husband spiked a 104-degree fever 30 minutes after coming out of anesthesia as we were preparing to be discharged. He ended up spending five days in the hospital with an E. coli infection caused by a small puncture made by the scope during the procedure. I learned quickly during my husband’s first hospitalization how important it is to ask questions. I am my husband’s sole caretaker — I am responsible for ensuring that the doctors and nurses are doing everything they can to treat him appropriately. However, without being a doctor, there is no way for me to know what the right course of treatment is without asking questions.”
You can read the full post here.
The healing power of pets
I’ve known for a long time that pets (dogs in my case) can sense when something is wrong. When I’m upset, Bomber, my Shetland Sheepdog, will climb in my lap and act super cute to cheer me up. That’s the reason I love pets so much- they provide you with so much love and comfort in ways that human companionship doesn’t. I mean, it would be pretty weird if my husband crawled into my lap and acted cute when I was sad, right?
Bomber has done wonders for Dan. Growing up, Dan never had a pet but loved dogs. When we started dating six years ago, I had a Shetland Sheepdog who was the sweetest little fuzzball, and Dan adored her. We both knew we would get a dog, but we didn’t know when. And Dan surely didn’t know how profound his impact would be on his life.
My old dog Taffy
#13 for the Restroom Access Act!
Today, Massachusetts became the 13th state to sign the Restroom Access Act into law. Big victory for IBD-ers.
“This bill will provide peace of mind to people suffering from IBD, who will be able to shop without fear of a publicly embarrassing situation,” said Rep. Louis Kafka (D-Stoughton).Kafka sponsored the bill in the House and led an eight-year effort to get it enacted. He introduced the legislation at the request of a constituent, Canton attorney Jonathan Rutley, who drafted the measure for his 17-year-old daughter and ulcerative colitis patient, Catherine (Catie).
For those who are not familiar with it, the Restroom Access Act (also known as Ally’s Law) requires retail establishments that do not have a public restroom to allow people with IBD, IBS, other chronic conditions, and pregnant women access to employee restrooms. As you all know, this is very important for IBD-ers. The last thing you need is to be out somewhere that has no public restroom and be denied access and have an accident.
Caring for Crohn's & UC 