Check out this music video about struggling with Crohn’s and colitis recently posted by Lauren Zoe Bruno. Lauren is a singer/songwriter who was diagnosed with ulcerative colitis at age 11. Now she is using her talents to raise awareness of inflammatory bowel diseases, showing once again that we can all use our talents to do something to fight against these diseases.
One of the guitarists in this video is Mike McCready of Pearl Jam, who also suffers with inflammatory bowel disease.
David Garrard, professional quarterback for the Jacksonville Jaguars, and a patient with Crohn’s disease, is very outspoken about his disease and for others suffering with inflammatory bowel disease. You may have seen him in commercials before.
Here’s an interesting video I found where he discusses how Crohn’s disease has affected his family life–from his wife and kid to his friends and other family members.
As much as those of us with IBD try to keep things to ourselves, invariably our families and friends get yoked into the struggle with us. And believe me, your family and friends will struggle with the disease almost as much as you, just in a different way, in a powerless and passive way since they know there is little they can do to relieve your pain and suffering.
From my own experience and from listening to the stories from others, it seems that the first few weeks following an ileostomy takedown or reversal are the most difficult for people who are now using a J-pouch. There can be a lot of doubts during this period about the decision that was made to have surgery, but it’s important not to get down!
Keep the end goal in mind, and watch this video. Hopefully you’ll get some encouragement to make it through this difficult time, a time when you are going to the bathroom so often it feels like you have ulcerative colitis again.
If you are looking for a great medical read that doesn’t focus specifically on ostomies and other associated grossness that usually comes with books in the “Inflammatory Bowel Disease” genre, check out Brenda Elsagher’s latest collection Bedpan Banter.
The focus on this collection of stories–from nurses to patients to family members of patients–is much larger than her previous book, “I’d Like to Buy a Bowel Please.” The medical topics in this collection include cancer, babies and pregnancy, nursing, bedpans, breasts, and, of course, bowels. While the book is subtitled “Medical Stories of Humor and Inspiration” the majority of the stories in this collection definitely fall more on the inspirational side, especially the stories of watching loved ones pass into the next realm. And this is a good thing.
This book really shows that, despite horrible circumstances that people often find themselves in medically, there can be hope, peace, and joy. While many of you are probably in a bad place right now with your bowel struggles, if you examine your life hard enough you can probably find instances of profound goodness in your own life, especially considering the tender moments you’ve shared with your loved ones over the journey.
Add a third language to the Translation Project: Catalan. Being the ignorant American I sometimes am, I had never heard of this language until approached by a speaker of it from Spain. That’s where the language is primarily spoken by a smallish number of people. But they get ulcerative colitis too.
The first video we’ve translated into Catalan was chosen mostly for its short length. More videos in this language will come in the future.
The Canadian Digestive Health Foundation has some new videos up that are worth checking out. One that may resonate with some of my younger viewers is this one featuring Orly Borovitch. Here she talks about some of the issues she had as a teenager with ulcerative colitis, notably the challenges of navigating the sometimes troubling teenage years that most people have dealt with.
As I’ve mentioned before while reviewing her second book, Brenda Elsagher is a comedian, national speaker, and ostomate who seeks to find the humor in medical situations. In this her first book, If the Battle is Over Why am I Still in Uniform? Elsagher discusses what she went through at age 39 after she was diagnosed with colorectal cancer.
A hairdresser at the time, Elsagher quickly had to come to terms with this embarrassing cancer as she prepared for massive surgery that left her with a permanent colostomy. After facing this life-changing situation, Elsagher decided to pursue dreams she had neglected, like becoming a comedian. Now, for the past decade or so, Elsagher has been speaking across the country to various medical and patient support groups.
This memoir is very honest and candid as Elsagher finds the light in her disease, and uses her experiences to help others. While most of my viewers are suffering with inflammatory bowel disease and not cancer, I still recommend this book to anybody dealing with disease of our pipes.
Of all the subjects of bowel disease that we could talk about, this one is perhaps the one that people like to acknowledge the least–wearing diapers to help manage a flare-up. There’s nothing pretty or dignified about it, but a surprising number of people share with me that they find it a useful tool to help them get out in public.
Many people are adamant about avoiding them, and if that sounds like you, at least watch this video and consider the possibility of wearing them to help get through the worst of a flare-up.
Keep fighting,
~Dennis
Question: Do you or have you ever worn diapers to get through a flare-up? Why or why not? Reply to this post!
This might be the last Spanish-subtitled video about my journey with ulcerative colitis for awhile, the long-awaited third surgery. Next will come more subtitled videos about managing an ileostomy and J-pouch.
I’ve got a new drug to tell you guys about. I know many of you are considering surgery but some people like to exhaust all their medicinal options before undergoing surgery.
Procter and Gamble Pharmaceuticals, makers of Asacol have just released a newer, stronger of version of Asacol called Asacol HD. The “HD” stands for “High Dose,” not “High Def” (as in high definition television).
Asacol HD is mesalamine, just like Asacol, and is intended to treat moderate ulcerative colitis, whereas Asacol is meant for mild ulcerative colitis. You may have tried Asacol in the first days after your diagnosis.
The main difference between the two medicines is the size of the dosage. Asacol is taken in 400 mg doses with a maximum of 2.4 g/day. Asacol HD is taken in 800 mg doses with a maximum of 4.8 g/day. So the new version of Asacol is simply double the dose of the old medicine.
The press information on Asacol HD make clear that one HD tablet is not bioequivalent to two Asacold tablets. In test results of Asacol HD, patients with moderate colitis showed a more positive response to the HD version of the drug after six weeks than to the mild version of the drug.
I asked the company how this can be and they replied:
[T]he active ingredient in both Asacol HD and Asacol is mesalamine, and it is identical in each drug aside from the dose. The 800mg has a similar eudragit coating as the 400mg, but due to the tablet size the release profiles of the coating are not identical to the release profiles of the 400mg tablet.
That’s as much as I know about the differences between the two drugs.
Clinical studies of Asacol HD studied the drug for six weeks, so its effectiveness beyond that time-frame has yet to be established. In studies, 75% of people had decreased frequency of bowel movements after six weeks and 80% had decreased rectal bleeding after six weeks. The drug seems to have relatively few side effects, but like all medicines there’s a chance of more serious side effects.
And as always, don’t take my word as medical advice, talk to your doctor about new medicines that you might want to try.
