My first gastroenterologist came to me by circumstance. I was referred to a different physician in the same practice, but when I needed to get in sooner, he was the one that had room in his schedule to do my colonoscopy. He was the one that diagnosed me with ulcerative colitis, and sweated over my case in those early days when I was struggling to hold on to my colon.
It might not be everyone’s favorite, and it’s certainly not health food, but I still love them.
Image © The D
At some point after we’d managed to turn things around and I finally stopped bleeding, I came in for a follow-up to his office. I’d been on a low-fiber diet for quite some time, because that’s how treatment went in those days. I’m sure I felt deprived at times but I remember mostly being grateful that I could eat at all. In the hospital I received nutrition through an IV and could eat no food, so even soft low-fiber foods were a step up. I’m sure I wanted a green salad, but a steady diet of turkey and mashed potatoes was the thing that was going to put the 20 pounds I needed back on my body. Continue reading
Is there always a piece of you that’s missing? Maybe a piece of information that you leave out when you meet new people. Do you keep your IBD secret because you might open yourself to problems at school or work?
Image © Pawe³ Windys http://www.freeimages.com/photographer/windys-39131
People sometimes tell me, “Oh, I’ve read your blog.” It’s often said almost sheepishly, as though it were something that were slightly distasteful or embarrassing. It does seem to take a little courage for people to tell me this, which also leads me to believe for every person who tells me this, there are others who are reading and yet never say anything.
For my part, I love it when people tell me they’ve read my writing. Especially when they don’t have IBD themselves or have a close friend or family member with the disease. While I do my best to reach people with IBD so that they have the information they need to make treatment decisions and live better, I also want to reach people who aren’t touched by IBD in order to recruit them as allies. After all, this is the very heart of awareness: people with IBD are already aware. We must reach those who have no reason to become educated about IBD, and offer them the tools to become aware.
Do you ever feel like the on that sticks out? I do, frequently. I’ve done my best to make the most of bad situations, but when it’s my child that is the one who “sticks out,” I don’t always react in the most rational, thought-out way.
A man approached me at an event, not an IBD-related one, and asked me what everyone was doing. The event was a walk at a local beach and it happened to be for food allergy awareness.
“This is a walk to raise funds and awareness of food allergy.”
“That’s strange,” he said to me, and made a face of disbelief.
“Why is that strange?” I said.
“Because you think it would be cancer or Alzheimer’s or something.” Continue reading
This is what Dr Google gave me when I searched for “Crohn’s disease.” I made a few edits because I don’t quite think this information is up-to-date. If I were contracted to edit this, and receiving payment for my time, I would send it back with a complete rewrite and a suggestion that the author was not qualified to write on the topic.
This is what searching Google for Crohn’s disease gives you. It doesn’t exactly inspire confidence, does it?
I hadn’t given too much though to my relationship with food until recently when it occurred to me that my experiences with IBD have influenced my diet since diagnosis. In the IBD community people often share ideas about diet and nutrition, and what we eat is all very different. It has taken me a very long time, but I’ve come to understand that IBD has probably had a strong influence on my relationship with food — and not in a positive way.
Cooper: “TARS, what’s your honesty parameter?
TARS: “Absolute honesty isn’t always the most diplomatic, nor the safest, form of communication with emotional beings.”
Interstellar has become one of my favorite movies. Don’t let the science fiction part of it get in your way — it’s not about that. It’s about what it means to be human and how to distinguish between saving individuals and saving humanity as a species.
Having a chronic illness is rather like having a secret. How do you go about telling people of your illness? Do you tell them at all?
I saw a posting in a closed IBD group recently where a member was asking for help in how to request accomodations at work without having to get specific about health circumstances. Advice was offered on how to handle the situation discreetly, until another member demanded that the advice seeker should “tell the truth.” “Why would you lie?” the response continued.
Not revealing the whole truth is not the same thing as lying. I was concerned about the helpfulness of this exchange, and I failed to see how it was productive for anyone. I don’t believe any person has the right to question another person’s decision to not disclose a health situation. We don’t owe each other the truth. Continue reading
“Can you see anything?” asked Lord Carnarvon.
“Yes, wonderful things,” replied Howard Carter, upon seeing King Tutankhamun’s tomb for the first time
On February 26, 2016, I attended an event at the Janssen Biotech facilities in Pennsylvania called The BioExperience. (Janssen is the company that makes IBD medication Remicade.) BioExperience. It sounds like a ride at Disney Epcot: exciting and full of potential. And actually it really was just that. Exciting and informative and something that I would never get anywhere else. I want to tell you a little about what this event was all about.
On March 9th, the IBD Social Circle held a Twitter chat to discuss pregnancy, birthing, and parenting as an IBD patient. I was the host, and Stephanie Hughes of The Stolen Colon was my co-host. Our featured gastroenterologist was Dr Edward Loftus, Jr of Mayo Clinic. It was a lively chat with lots of great information that I don’t want anyone to miss! Here are some of the best Tweets from the chat!
What is advocacy in the inflammatory bowel disease (IBD) community? Even advocates don’t agree on exactly what this means, maybe because we all advocate in our own unique way.
Myself, Kelly Crabb, and Brooke Abbott at the Premiere of Ryan Stevens’ movie about his swim across Lake Erie, Courage and Crohn’s.
My advocacy started in 2000, shortly after undergoing j-pouch surgery, when I began writing the IBD topic site for About.com. The site has undergone several changes over the years, but what I’ve consistently tried to do is to provide quality, accurate information about IBD that anyone can access, for free. The site has been amazingly successful, and it has been rewarding for me both personally and professionally.
“It would be the death of you to come with me, Sam,” said Frodo, “and I could not have borne that.”
“Not as certain as being left behind,” said Sam.
“But I am going to Mordor.”
“I know that well enough, Mr. Frodo. Of course you are. And I’m coming with you.”
― J.R.R. Tolkien, The Fellowship of the Ring
Frodo, Sam, and Gollum (who was also suffering from being under the spell of The One Ring) in Emyn Muil, on their way to Mount Doom to destroy the ring in the fires there.
© Tomasz Steifer, Gdansk, under the Creative Commons Attribution 2.5 Generic license.
Do you feel supported in your daily life, as you navigate your way through your diagnosis of IBD? Support can come in many forms, and you probably have several sources of support, but I think it’s probably rather rare to feel supported all the time.
In The Lord Of The Rings, Frodo the Hobbit is charged with carrying The One Ring. The One Ring, which looks like a simple gold ring, is infused with evil power, and it poisons Frodo in body, mind, and spirit. Frodo’s friend and companion is Samwise, who travels with Frodo to destroy The One Ring before it can fall into the wrong hands. Frodo becomes increasingly unstable during their journey — obsessed with The Ring and, in the end, unable to even walk. Sam carries him. Continue reading