Posts tagged ‘ulcerative colitis’
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.
The ABC’s of Crohn’s Disease & UC: “A”
Weeks ago, I had an idea to come up with the ABC’s of Crohn’s Disease & UC. This has turned into a HUGE task- coming up with things that are related to the two diseases with every letter of the alphabet. But at the same time, I’ve learned a lot more about the diseases than before by researching the two diseases and the various symptoms, medications, complications, and other things related to IBD.
That being said, here is installment number one: the letter A.
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.
Turning lemons into lemonade
I grew up turning everything into a joke.
For example, when my mom was diagnosed with cancer in 2006 and lost her hair, we bought her a Du-rag and tried to get her to wear a Bob Ross Afro wig.
It’s no surprise then that Dan and I try to take on Crohn’s with a light heart and lots of jokes. It’s definitely hard at times to find the humor in our situation when there is so much bad (hospitals, medication, medical bills, etc.) but we do our best.
The three times Dan has been hospitalized, I have taken photos to chronicle the experiences. While it might seem a bit strange, it helps us to keep our moods up. We also make a lot of puns related to poop and the other things that go hand in hand with Crohn’s Disease and Ulcerative Colitis.
For the last three years, we’ve participated in CCFA’s Take Steps Be Heard walk and because of our jokes, it’s only appropriate that our team name is Shits & Giggles. This past year Dan was the honored hero at our walk AND we were the first place fundraiser on the day of the walk!
If I could give one piece of advice to all those either suffering from or taking care of someone with Crohn’s and Colitis, keep your spirits up and try to laugh. It’ll help make the bad times be a little brighter.
What do you do to make Crohn’s not hurt so much?
Caring for Crohn's & UC 