This About Sums It Up

A Good Time to Adopt a Critter

I have recently been urging you to donate to the Crohn's and Colitis Foundation of America, not only because I am fundraising and training for the Miami half marathon on their behalf this January, but also because charities need extra assistance during times of financial hardship. (That would be now).

The same goes for animal shelters and humane societies. Many of these organizations rely heavily on donations to cover the cost of caring for the animals that are brought to them needing help. Not only are shelters strapped for cash, but because many pet owners are struggling financially, more people are being forced to give up their animals because they can no longer afford to care for them. Some animals are left behind to fend for themselves in empty homes that have been foreclosed on.

Now is a great time to bring an animal into your life and to donate money and supplies to local animal shelters and rescue groups. It is now common knowledge that caring for an animal helps to reduce stress levels, increases happiness and can even lengthen your life! I for one could not have made it through my long illness without my kitties. They are a great reason to get up every morning.

At the end of October, Tony and I heard about the struggling animals and shelters across the country. We decided we had plenty of room for another animal, so we looked on Petfinder.com and adopted a dog named Cassie! Cassie is a two-year old Border Collie Whippet mix who was left at a shelter about to deliver her puppies. A rescue network took her in, adopted out her puppies and then sent her to us. The second she walked in the house, she knew she had a home. She jumped up and down the flipped right over for a belly rub. Here we are together:




If you can take on the responsibility, now is a really good time to adopt a critter!

I've Logged More Than Five Miles...Really

I'm still alive and I'm still training for the Miami half marathon to benefit the CCFA, but you wouldn't know it if you had been going by my Nike+ profile. For some reason, my kitty Maddie absolutely loves the smell and feel of my tracking bracelet. One night I accidentally left it out on my desk...the next morning I found it on the other side of the house, basically dropped on its head. It's no longer working, but I can only blame myself. It's scientifically impossible to be upset with Maddie because it's so cute when she carries stuff around in her little muzzlepowsche (please see this example).

The bracelet was handy to track my distance and pace, but it's most important to just run a little bit longer each week than you did the last. Tony and I have not been able to train as often as we would like, but we are continuing to train in general. Like every other runner on the planet, little aches and pains have crept up and occasionally kept us off our feet for a few days at a time. And, no surprises here, so do my guts. Running can stir things up at times if you catch my intestinal drift.

Speaking of which, I think having a chronic illness has actually prepared me to a more responsible runner. I'm beginning to think that chronic illness is the best life coach/teacher I could possibly have. Because of my experiences with Crohn's, I know how to eat well and listen to my body and I also know how important it is to rest and recover from injury. Our coach Jenny said this at the beginning of our training: the people who are at the front of the pack in races are not bandaged, limping, or wincing, because they know the value of rest and recovery. In running, in chronic illness, and in life, I have discovered that it's okay to take the time you need to get rested, since that's the only way you'll be successful and live to tell of your glory. Taking the time you need doesn't make you weak, it makes you smart and balanced.

So far, I can run comfortably for about an hour and fifteen minutes and cover about five miles in that time. I feel sure that I could continue to walk for a long time after that, so even if I had to run/walk Miami tomorrow, I would presumably finish on the same day that I started. That's a far cry from huffing and puffing after thirty seconds--I am satisfied with my progress.

Not only am I running longer now, I'm also getting totally ripped by lifting weights at the gym with Tony. Weight training is good for runners because it helps to strengthen the core muscles, and it is good for everyone in general, especially women, because it strengthens bones. I also have to move furniture around a lot, so being a hoss is an added bonus in that department. But relax, the next time I see you and shake your hand, I'll refrain from crushing it, pansy.

I'm about half-way there in terms of collecting the donations I need to meet my fundraising goal. It's the season of giving and it's also been a very difficult time for charities and non-profits because of the economy. The CCFA does really important work for Crohn's and colitis patients, so any donation you can make, even a small amount like $5, will be so appreciated. Both Paddy and rachelcreative have given generously all the way from the UK--cheers to them! My US readers won't let the Brits dominate though...will they?

Buy a Print, Make a Donation

Some of you may have clicked around the site and seen Tony's artwork. If you are interested in buying a print or painting from Tony, now is the time. He is donating all the profits from sales at his Etsy shop to his Miami Half Marathon fundraising page!

Help Me Out, Will Ya?

I've run over thirty miles since the last time I posted on this blog and I know what you're thinking:

WHY?! Why would you do that when you could be inside watching 90210?!

Yeah, I know. That's occurred to me. But not only does running make me feel happier and more energetic, it turns out that it's pretty fun and pretty easy when you're running for a good cause. To raise awareness and money for the Crohn's and Colitis Foundation of America (CCFA), Tony and I have begun training for the Miami Half Marathon, which we'll complete in January of 2009. We're training with Team Challenge New England, a CCFA-sponsored group that provides a supportive running coach, a nutritionist who specializes in IBD, and a training plan to help us get where we need to be mentally and physically. So far it's been really fun to meet a lot of other people with Crohn's and ulcerative colitis and encouraging to see that my body is bouncing back from a rather long and unromantic illness.

Each member of Team Challenge is responsible for raising $3,900 in donations to the CCFA. I know I can raise this money--I just need your help! You can click here to make a donation on my Team Challenge page. Any amount helps me reach my goal and I will be so appreciative of your donations. I think about all the people who have donated and supported me when I run, and that is all the motivation I need to get up and go.

82 cents of every dollar that you donate on my behalf to the CCFA goes to funding research for a cure. Last year, the CCFA put $16 million into research grants--and that was only 10% of the grants that were proposed to them. Just imagine where Crohn's and colitis research could go if they could fund all of those grants! So if you have Crohn's or colitis, if you know someone who does, or if you just enjoy reading this blog, I hope you will consider making a donation on my Team Challenge page. I hope you will also spread the word that I need help to reach my goal! Paddy, whose story about ulcerative colitis is below, has already generously donated with no prompting! Hooray for Paddy and thank you!

I've added a Nike+ profile on my sidebar to the right so that you can track my progress, and I'll be updating the blog with how Tony and I are doing with our training (psst...you can donate to his Team Challenge page here).

And by the way, I still watch 90210--just after I run. :)

Life with an Ileostomy, Forty Years On

Since I started the blog last year, I've gotten tons of email from people all over the place. Some people ask me for advice, some kindly wonder how I'm feeling, some are questioning their doctor or their diet or wonder whether they should go ahead with surgery.

Most of the people who email tell me their stories, too. Often I hear from young people like me who have been recently diagnosed and want to know what to do. I also hear from people of all ages who say, "Thank goodness someone is talking about Crohn's!" which is very gratifying and encourages me to keep writing. Some of my favorite emails are from people who have had Crohn's or uc for decades and want to tell me they're feeling great and have adjusted well to a life of chronic illness, despite the hardships involved. It's reassuring to know that so many people make it through, even if they have parts missing!

I recently received a remarkable email from Paddy in Derry, Northern Ireland. She has had ulcerative colitis and an ileostomy for most of her life and she kindly agreed to let me share her story with you. Here is what she had to say:

"I am 57 and today my ileostomy is 40 years old - I had my surgery on Friday September 13, 1968. It was originally a temporary ileostomy to see if the 'rest' would cure my Uncerative Colitis - it became a permanent ileostomy on March 4 1970 - thank goodness!

I think my disease struck when I was about 12 - it's generally a disease of the young. Surgeons at our local hospital wanted to perform a permanent ileostomy in December of '64, but my mother decided on a second opinion and a trip to Radcliffe Infirmary, Oxford. Coming under the care of Dr Sydney Truelove meant no surgery - at least for the moment - and treatment by prednisone. Dr Truelove was a world famous gastro-intestinal physician and had discovered the use of cortisone as a treatment by way of retention enemas. He also decided the criteria for surgery. I was a lucky girl.

I never wanted a reversal done, despite needing to have my stoma refashioned three times because it regressed. So when the assessment was to be made I told Dr Truelove and my surgeon Mr Lee that I wanted to stay as I was. It might end up permanent some day anyway, so better the devil! Dr Truelove said he'd never had a patient who didn't want a reversal done! So here I am 40 years later and it's great.

Did you know that stoma patients (ileostomies anyway) are among the best dressed, well groomed people? I guess subconsciously we are sending out a message that we are as good as anyone else. I have never hidden the fact that I have a stoma. I did an interview on local radio quite a few years ago and was amazed at the number of people who came into the bank where I was a teller to say how great the radio piece was and that they'd never known there was 'anything wrong with me.' I have become so used to this that I assume that everyone knows.

I remember at a checkup after my surgery, my surgeon asked how I was getting along (I was great). Then he spelled it out for me - relationships were really his question - and he then said that if anyone didn't like my stoma, they weren't worth knowing in the first place! [Ed's note: too true!]

I've been so lucky. The old rubber bags which took half-hour to change were my original appliance. I think it was about 10-15 years before the disposable bags were really coming into use and I had the courage to try one. I tried the Eakin Drainable bag which has a large cohesive flange attached and changing only takes about 5 minutes with the minimum of bits and pieces. I even changed it on a flight from London to Trinidad, about 40 mins from Barbados.

You talk about being proud - it was the first time I changed it away from my own bathroom. I almost felt like making an announcement over the PA system to let everyone know what I'd done! That was in 1980 if I remember correctly. Don't really think my fellow passengers would have wanted to know!"

I personally think Paddy deserves a medal for a first time ileostomy change at 30,000 feet in the air! I also thought it was great that Paddy was really assertive about what she wanted to do with her body, despite the fact that everyone else had made different choices at the time of her original surgery. Her advice to anyone with Crohn's or uc is to have fun and laugh at life when you can. Paddy is retired now, but she keeps busy singing with her mixed-voice choir, the Doire Calgach Singers. See if you can pick her out of the line up...but I bet you can't, since Paddy is right, you never know who has an ileostomy!

Thanks Paddy, for sharing with everyone.

Here's Something Unusual:

Good news from Washington!

This week, Congress passed the ADA (Americans with Disabilities) Amendments Act of 2008. Now, conditions that impact at least one "major life activity"--digesting food leaps to mind--are covered under the ADA, so it should be a lot easier for people with Crohn's and uc to be protected. Also new is the mention of remission and the use of medication to manage conditions. Under the amended act, if a condition can go into remission on its own or with the help of medication, but still make a total mess of things when active (get it?), it's covered.

This is very encouraging, no?

Patient Voices: Crohn's Disease

I missed this because I was on vacation, (i.e. bloated) but the NYTimes recently published a multimedia presentation called Patient Voices: Crohn's Disease. It's a great collection of interviews with people of various ages and ethnicities who have Crohn's. Listening to their stories makes it obvious that although each person's disease activity is different, the overall experiences of having Crohn's are nearly universal (lifetime hatred of Jello, for example).

The multimedia bit was first introduced by the Times' Well Blog, and the post has inspired many comments from people with Crohn's who have similar tales to tell.

Also in the news is that "a study of an x-ray alternative to colonoscopies confirms its effectiveness in spotting most cancers." No word on whether this could also be applied to finding evidence of Crohn's or ulcerative colitis, and more importantly, no word on whether or not you still have to drink the melted plastic bag mixture to clean out your unfortunate colon beforehand. The x-ray method is cheaper and less invasive, but honestly, I would gladly pay more for the procedure and have a tube up my rear if it means I get some sedation and I can avoid drinking the Death Draught.

I Wanna Get Back On!

I have a confession to make, folks. I fell off the Wagon of Health and Good Habits in a pretty big way. I totally blew my Crohn's-friendly diet, my energy reserves, and my new zen-like response to stress. In short: I went home, to the Great State of Texas.

I went back for two weeks to see family and friends, and to show Tony the sights of the state, i.e., the good eating. (please see informative diagram below:)



If you are familiar with Texas at all, you know that you'll find the best, most fried, fattening, artery clogging food there. And that you will drive from place to place to get said food, and then you will be too dang hot to do anything but digest (badly) in the AC, bloated and twitching. And then when you can get up again to scoot to the freezer, you eat some Blue Bell, the best ice cream in the country. It's the way it should be, really.

But it's not the way in can be for me anymore, and I ignored that during my trip. By this point in my Crohn's journey, I know what it takes to feel my best in terms of food, rest, and stress-reduction. The rewards of taking care of my body are infinite, and the ill effects of not particularly taking care of it are equally bad. The sad part is that I knew what I was doing and just gave into it, even though I felt terrible, physically and mentally.

Going back to Texas is always fun, but the reality is that my life there was different than my life is now, post Crohn's. It was so tempting to feel I was free to be my old self again, a young person that can eat anything and everything, and in the quantities I wanted to indulge in to boot. Not only did I eat the wrong things, but I pushed myself to do too much and to sleep too little. It's difficult to be around the people I love but only see once a year and to say, prudently, that I need to go to sleep rather than to stay up and talk. I'll also tell you that it's particularly hard to say no to a road trip to the Czech Stop. They have these peanut butter cupcakes that must be tasted to be believed. (Delicious is their business! Observe their guestbook, which is crowded with people scattered about the country, imploring the Czech Stop to ship them some kolaches!)

It took me about a month after I got home to sleep off what I needed to sleep off, and get back on track with my regular diet to remove the traces of Whataburger from my psyche (and, um, other parts). Next time, I will have to do things differently. If I ate better and slept more, I would be able to more fully enjoy myself and my friends and family (for one thing, I'd be able to see straight and sit upright). Learning these lessons is just part of accepting that I have a chronic illness like Crohn's. I think it's part of the ongoing grieving process, realizing that I'll never again be who I was. One day, sometime soon, I'll be okay with that.

And for now, I guess I can grudgingly admit that abstaining from consuming a half gallon of Blue Bell a day is not such bad thing for my life in the long run.

There. I said it.



P.S. There is a new Crohn's blog in town! The Bright Side of Crohn's is written by a young lady like me who was very recently diagnosed. She has a lot of great things to say and insight to give. Go check it out!

What Do You See That Makes You Say That?

Back when I was hip-deep in the art world, I frequently gave tours at the Museum of Fine Arts Boston and the university gallery where I worked. I enjoyed ushering people around, answering questions, and talking with visitors about their impressions and ideas. Some of the tours I gave were traditional, in that I would lead my tour group around a gallery and give a prepared talk about objects I had picked to fit a theme. Those were usually good, if not nerve wracking, and people seemed to like them.

My favorite tours, though, were non-traditional, and I think more productive. For these I used an observation technique I learned in school called Visual Thinking Strategies, or VTS, which involves encouraging the tour group to look carefully at an object and to share what they notice about it. The tour guide only says two things: first, "What is happening here?" and then over and over, "What do you see that makes you say that?"

I know. It sounds absurd, but it works. The point is to keep the discussion open and avoid a didactic narrative. By asking the group to focus carefully on the visual aspects of the work and what those might communicate, they create their own understanding of it. After the group gets over its initial shyness, a few people start talking and by the end of the tour, the whole group has usually had an enthusiastic discussion. More often than not, they hit upon the main points I would have made if I had been giving a traditional tour (after all, if the artist is any good, they will communicate well through their work).

So why do I bring this up on my Crohn's blog? There was an article in the Boston Globe a few days ago about doctors and VTS called "Monet? Gauguin? Using Art to Make Better Doctors."
Apparently, medical schools have started using VTS to improve future doctors' observational and diagnostic skills. "What's happening here?" and "What do you see that makes you say that?" are the kinds of questions doctors need to be asking themselves when they examine a patient. Just as this technique helps to keep museum visitors from relying on the given narrative, doctors can use their powers of observation to look for physical clues in a patient's body that they may not report directly or have listed in their chart.

And according to a study that noted a 38% improvement in accurate observations by students who had studied VTS, it's working. Pretty brilliant cross-over from the art world to the medical world, huh?