Posts filed under ‘Caregiving’
Clearing the Air About Crohn’s & UC
There’s been a lot of confusion recently inside and outside of the IBD community on the differences between Crohn’s disease, ulcerative colitis and colitis and whether or not you can have both diseases or not. Because of all the confusion, I asked Dan’s gastroenterologist, the amazing Dr. Deborah Proctor, medical director for the Yale Inflammatory Bowel Disease Program, some basic questions to get some clarification.
What are the main differences between Crohn’s disease and ulcerative colitis?
Crohn’s disease is one of the major types of inflammatory bowel disease. Crohn’s can affect any part of the gastrointestinal tract from mouth to anus.
Ulcerative colitis is another major type of inflammatory bowel disease. Within the gastrointestinal tract, ulcerative colitis affects from the rectum up to the colon (the large intestine).
What is Crohn’s Colitis?
It is a type of Crohn’s disease that affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others. Crohn’s Colitis does not mean you have both Crohn’s disease and ulcerative colitis.
Can you have both Crohn’s & UC?
No. You either have Crohn’s disease or ulcerative colitis, but not both.
Can your diagnosis change over time?
Yes. Some people are diagnosed with one disease and the diagnosis is changed later in life (my friends like to call this being upgraded). Ulcerative colitis can change to Crohn’s disease; however, Crohn’s disease CANNOT become ulcerative colitis.
Ulcerative colitis is a diagnosis of exclusion- there are no fistulas and it only involves the colon. Once a patient has a fistula, the diagnosis becomes Crohn’s disease.
What is colitis?
Colitis is a generic term for inflammation in the colon. It is often used to describe an inflammation of the large intestine- colon, cecum and rectum. Colitis may be acute and self-limited or chronic. It broadly fits into the category of digestive diseases.
Crohn’s disease and ulcerative colitis are considered types of colitis; however colitis alone is NOT an inflammatory bowel disease.
Are there any other types of inflammatory bowel disease?
Indeterminate colitis- this is a diagnosis given when a doctor cannot tell which type of inflammatory bowel disease the patient has. There is an overlap in some symptoms and sometimes only time will tell which disease the patient has.
How should you refer to inflammatory bowel diseases then?
You can say Crohn’s disease & ulcerative colitis or, alternatively, inflammatory bowel diseases. In theory, you can say Crohn’s disease and inflammatory bowel disease, but in my mind, since Crohn’s is a form of IBD, that seems exclusionary and also redundant. To say Crohn’s disease and colitis is inaccurate. The easiest thing to do is, when talking about both diseases, to say inflammatory bowel diseases and call it a day.
Tell the Cincinnati Police Department that an #OstomyIsNotATragedy!
Earlier this week, a story came out on WCPO, a local news station in Cincinnati, about the Cincinnati Police Department’s newest initiative to try and deter at-risk youth from entering into a life of violence. Sounds great, right? Well it would be if they weren’t using images of people with ostomy bags as the deterrent. In fact, in the story Lieutenant Joe Richardson says,
“You’re not killed, but you’re walking around with a colostomy bag and that’s just not the way to get a girl’s attention, by limping down Warsaw Avenue with a colostomy bag.”
If that’s not offensive, I’m not sure what is.
Well, the IBD community is fighting back against this distasteful discrimination against those with Crohn’s disease, ulcerative colitis, colorectal cancer and other ailments who live everyday with ostomies and lead full, meaningful lives.
Yesterday, the Huffington Post ran a piece I wrote with Stephanie Hughes from The Stolen Colon about this new initiative and why it’s not okay to further stigmatize ostomates. Here’s a snippet from the piece:
There are more than 500,000 people in the United States living with ostomies for a variety of reasons, including Crohn’s disease, ulcerative colitis and colon cancer. These people live normal lives — they have meaningful emotional and physical relationships, hold jobs, and go swimming, rock climbing, sky diving and every other activity under the moon. Ostomies, for many, are not a punishment — they often mark the beginning of a new, pain-free life.
There is also a petition circulating urging the police department to apologize and stop discriminating against ostomates.
Lastly, we are using the hashtag #OstomyIsNotATragedy on all social media outlets to track people’s efforts to reach out to the CPD and urge them to stop this initiative.
So get involved everyone! Sign the petition and take to the social media universe and let’s all stand together telling the Cincinnati Police Department that an #OstomyIsNotATragedy!
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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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.
Health Activist Writer’s Month Challenge Day 4
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:
Crohn’s and Colitis Foundation of America
Health Activist Writer’s Month Challenge Day 3
Post a picture that symbolizes your condition and your experiences.
Here is what I thought was a good one for symbolizing Crohn’s disease and my experiences with it:
I know I’m not supposed to use words but I want to elaborate a tiny bit as to why I picked this image.
Living with Crohn’s is a constant battle of ups and downs. I can attest to that. Dan has gone through good periods and bad ones and there is no rhyme or reason as to when they occur. It can feel like we are on a roller coaster ride- going up a hill to get to remission, plateauing when he feels well, and then plummeting when his Crohn’s acts up.
This picture also represents how there are highs and lows emotionally with Crohn’s disease- happy when you are feeling well, scared when something is wrong, and sad when the disease interrupts your life.
Health Activist Writer’s Month Challenge- Days 1 & 2
I’m a little late to the game (by one day) but I am going to try to participate in WEGO Health‘s challenge this month. April is Health Activist Writer’s Month and brings the official Health Activist Writer’s Month Challenge. Every day, health bloggers and other online writers will get a prompt and I will explore the different topics on here as often as I can. That being said, here are my posts for Day 1 and 2!
Caring for Crohn's & UC 