People email me everyday with doubts about treatment options. Sometimes the doubts are about the effects of medicine long term, sometimes they are about living with an ileostomy, and sometimes they are about living with a J-pouch.
And doubts are good! Doubts are to be encouraged. If you doubt something it shows that you care about it.
Just don’t let your doubts paralyze you into inaction.
Keep fighting,
~Dennis
Question: What doubts do you have about your future treatment options? Reply to this post!
If you are curious about what teenagers with ulcerative colitis go through, or maybe you are a teenager yourself, check out this video by Madison and Chelsea. These teens cover all sorts of issues from friendship, spirituality, God, medicine, history with flare ups, boys, whatever. What I enjoy the most is that they realize that ulcerative colitis can change you and make you a deeper person, which I think is so true.
I introduced you to Nadia a little while ago, a high school girl who’s gone through the whole struggle with Crohn’s colitis. Recently she had a hiccup in her recovery from j-pouch surgery. They discovered she was iron deficient and needs iron infusions several times over a three month period. Instead of poking her with needles every time, they decided to give her a PICC line.
Watch this video as she shows–in graphic detail–what it takes to insert a PICC line. For those who don’t know, a PICC line usually goes from the upper arm into the chest and down near the heart. Close to the heart is where the largest arteries are, so that when fluids and medicines get pumped into the body they are diluted instantly.
This girl is notable for her courage in going through this procedure and showing it to the world. If you have any comments for her message her on her YouTube channel.
Keep fighting,
~Dennis
Question: Have you ever had a PICC line? What was your experience like? Reply to this post!
Since this book is part of a “First Year” series of books on medical issues, the book’s format walks the reader through various information they need to know in their first year of having IBD. It starts with chapters for the first seven days, followed by the first four weeks, and finally each month thereafter until month 12. This book provides information on a large range of topics, including medicines, alternative treatments, complications, surgery options, coping with depression, dealing with pregnancy, and the role of nutrition. This book taught me a lot that I didn’t know and I occasionally go back to it as a reference when a viewer talks to me about some sort of treatment or medicine that I am not familiar with.
However, the “first year” format of the book is entirely pointless. The chances that somebody with IBD would start reading this book the first day they were diagnosed with IBD is slim at best, though the information contained in the first seven days chapters (the first third of the book) is valuable nonetheless.
Additionally, there is no reason to wait until a certain month into your disease to read a chapter that may be relevant for you. Example: Sex, fertility, and pregnancy issues are discussed in months 6 and 7, but chances are your first questions about this issues won’t come up exactly at that time. Additionally, information on traveling with IBD doesn’t come up until month 9, but what if you have to travel before then? Instead, one should either read the book through cover to cover in a week or keep it on the shelf as a reference.
And finally, this is nitpicking but throughout the book Sklar enhances her somewhat dry and technical prose with anecdotes from others who suffer from IBD. While the anecdotes on their face add something to the education, almost all of the people quoted are women. I made of list of all the people referenced in the text. On the women side we have stories from Sunni, Jenny, Lynn, Amy, Jerri, Michelle, Vickie, Rachel, Jacy, Emily, Karen, Peggy, Bonnie, and Lindsey.
On the men side we have stories from Tom and Mike.
Overall, if you want some objective and focused literature on different medicines, treatments, and technical aspects of IBD–information that I have a hard time presenting–check out this book.
Japanese isn’t the only language my videos are being translated into. Now up, Spanish videos! Thanks to Martin in Barcelona for helping me translate. He’s very excited about this project so there will likely be many more Spanish videos in the future.
The first translated is “My Scars” the one showing my scars post first and second surgery. It was a short video so I felt like translating that first.
Also, check out the new Spanish United Colon Vlog channel on YouTube. Subscribe here to get the latest videos added in Spanish.
As each video gets translated I will likely post a story here on this vlog. The reason for that is so I can link directly to a particular video elsewhere on the site. In no way does this mean I will replace my usual content for content you’ve already seen before. I still plan on posting my own videos, others’ videos, and news stories several times a week as before.
Toshio has come through again with another great translation of one of my ostomy videos. More translations are forthcoming. Send your praise to him when you get a chance.
As I’ve mentioned in passing, I will be volunteering for a week at Camp Oasis this summer in Willow River, MN, sponsored by the Crohn’s and Colitis Foundation of America. The camp director is a lovely lady who’s daughter suffered with colitis at a very young age and had surgery when she was 12. The women’s health website, Your Total Health did a story recently about what the young girl, Bridget Alldritt, went through. Check out her story here.
This site has two other related posts by other women who’ve suffered with ulcerative colitis. I’m always on the lookout for avenues to share more women’s stories since this is a perspective I can’t cover in my videos. For your curiosity check out Adi Bodenstein’s story, age 22, and Jana White’s story, age 35.
Inflammatory bowel diseases are notoriously difficult to get under control and in remission. Those of us who suffer with them try every medicine and treatment and diet we can find to find relief from the symptoms. Since I’ve been through the thick of it I have sympathy for others who are unable to find relief from their suffering.
That being said, we are all in charge of our health. Responsibility for our health ultimately lies with us, not the doctors and nurses assigned to treat us. Many times, those of us with IBD get frustrated and impatient when treatment isn’t working. So instead of being persistence with our treatment, we can get lazy or passive, which leads to no good.
So I posit the question to all: are you making your health worse by ignoring your disease and treatment? In the end your only hurt yourself and prove no point to no one.
