Author Archive
A Baffling Side Effect
We are confused.
In the six and a half years that Dan has been treated for Crohn’s disease, he has lucked out in that, for the most part, he has not experienced any serious side effects from medication. Asacol did nothing to him (in fact, it didn’t even help him). The only other medication he’s been on is 6-MP and that gave him terrible fatigue so severe that he could barely function.
Remicade
For the past 3 years, Dan has getting Remicade infusions every six weeks. He suffers very little side effects from it- in fact, the only thing he feels from it is sleepiness after the infusion caused by Benadryl and a slight headache. These all pass within a few hours to a day of the infusion.
As you know, Remicade can cause a variety of side effects ranging from mild ones like headaches, stomach pain or nausea to serious ones like joint/muscle pain, vision changes and anaphylaxis. Dan’s reaction to the medication, so far, has been on the mild side (knock on wood).
However, for over a year now, we have been baffled by one side effect he’s been experiencing since being on the medication – extreme thirst. Dan is extremely, insatiably thirsty every day. He has some days where when he wakes up, the thirst/dehydration is so bad that he feels nauseous and ill. He drinks constantly throughout the day but nothing seems to help his thirst.
COBRA: My love-hate relationship with insurance gap coverage
When I left my last job, I thought I was going to immediately start on the insurance plan at my current job. Unfortunately I was wrong- there was a month in which I needed to wait before I could become part of my company’s insurance plan. For many people, this wouldn’t be an issue- just go without insurance for a month and then start on the new plan on the first of the next month. However, when you have an autoimmune disease, you shouldn’t have a lapse in insurance- you never know when something is going to happen where you will need your insurance.
For Dan and I, there was a whole other reason for needing to have insurance during that month- Remicade.
Remicade is administered once every 6-8 weeks to people with moderate to severe Crohn’s disease and ulcerative colitis. Dan has been on Remicade since August 2010 and it has been his miracle drug. He goes every six weeks for a two hour Remicade infusion and that’s it for his medication. Since Remicade is a miracle drug, it has a hefty price tag associated with it- as much as $10,000 per infusion without insurance.
So here’s our predicament:
I left my last job on May 24 and the insurance from that job expired on May 31. Dan was scheduled to get his Remicade infusion mid-June and, while you can push it back a few days, we couldn’t push it back two weeks until we started on my new insurance. And lord knows, we can’t afford the cost of the drug without insurance.
So what could we do?
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Guest Post: Living with an Ostomy
I am about a month in to my new job and sadly, life hasn’t settled down enough for me to get back into the blogging swing of things. Therefore I bring you another AWESOME guest post to bridge the gap while I am unable to post.
As I wrote earlier this month, I got to meet Stephanie Hughes at the Virginia Wine Country Half Marathon where we were both participating and fundraising for Team Challenge, CCFA’s endurance training program. I read Stephanie’s blog, The Stolen Colon, and loved how positive she was (she’s also pretty funny- check out her Ode to a Rectum). So I was extremely excited to meet her and get to know her (and find out how similar we are).
Stephanie and I before the half marathon
Some quick background on Stephanie: she was diagnosed with Crohn’s disease in 1999 when she was 13. After battling with the disease for over a decade, Stephanie had most of her colon removed on May 7, 2012 and was given a permanent ostomy. And just two days after our half marathon, on June 3, Stephanie had the rest of her colon removed.
Below Stephanie talks about living life everyday with an ostomy.
Team Challenge!!!!!!
Today’s blog post is long overdue. I have had a lot going on in my personal life- getting a new job, trying to find (and failing) an apartment in a new state while starting the new job, training for Team Challenge, etc.- that the blog fell to the wayside. I have not given up on it! It’s just on a little hiatus.
TEAM CHALLENGE
I would be remiss if I didn’t do a post today. Today was the Virginia Wine Country Half Marathon. For the past 16 weeks, I have trained with a team of amazing people to walk the half marathon with Team Challenge, CCFA’s endurance training and fundraising program. We were out bright and early on Saturday mornings, rain or shine, hot or cold, racking up the miles to get to this point. I am floored by how much I accomplished. Prior to March (our first training), the most physical activity I had done in recent years was hike 1-2 miles with my dog, and even that would make me wheeze. Here I was walking 10 miles and, while I was in pain, it was doable. That is an AWESOME feeling.
8 mile training
CCFA Releases Research Progress & Goals
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.
Guest Post: The Silent Battle Before an Ostomy
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.
Health Activist Writer’s Month Challenge Day 10
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.
Health Activists Writer’s Month Challenge Day 9
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.
Health Activist Writer’s Month Challenge Day 5
“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.
Birthright Israel Trip for People 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 rachel@routestravel.com.
Caring for Crohn's & UC 