News, articles, resources and more for the person with Crohn’s Disease.

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In This Issue.....

Got Crohn's Disease? Need inspiration?
Here's a large dose for you.

This month, I interviewed Tiffany, better known as betagirl, at the Crohn's Forum at www. healingwell.com.

This interview came about because of a post by Tiffany at the HealingWell.com Forum. Like others who read the post, I became inspired. Here was a lady doing a physical sport even though she has Crohn’s Disease. I thought to myself, I have to interview her. I’m glad I did.

The Interview with Tiffany (BetaGirl)...

How long have you had Crohn’s Disease? When were you diagnosed?
I've had crohn's for just over 3 years. I was diagnosed in May of 2002 when I was 26 years old.

Tell us the rest of your Crohn’s story.

I'd had what I thought was a "nervous stomach" for a long time, probably since high school. I never went to the doctor for it, just figured it was who I was. I was hit with the red flag crohn's symptom of bleeding one day while at work, then started getting bouts of 15-20 trips to the bathroom a day. Something I'd never really had happen before. I also started to lose weight, and in the end I lost about 25 pounds. I had the usual tests, and was diagnosed by a small bowel follow through with about 4-5 inches of crohn's in my small bowel. It was considered very mild, so I was started on Pentasa. I've since been on a plethora of crohn's meds and spent about 10 months getting my original diagnosis confirmed. I've been on pentasa, entocort, imuran, 6mp, flagyl, cipro, remicade, and humira. I'm currently on 6mp and Humira and take vitamin B12 shots once a month.

I'm one of the lucky one's to be in the fistulizing crohn's category, and I've had 3 fistulas over the past 2 years. I developed my first fistula in 2003 which I had surgery to fix. I went on remicade, which I soon developed an allergy to. My GI worked some angles and got me into a clinical trial for Humira, which I've been on for about 1 and a half years even though it has yet to be FDA approved for crohn's disease. It works very well for me, has closed 2 fistulas, and as of my last visit I'm "not quite in remission but close" according to my GI. It's been a challenging 3 years to find out what medications work well for me, but with the help of a great GI and a good sense of humor I've managed to work my way through it.

What do you do to help you deal with this disease?

For me having a sense of humor has been critical. I try not to take what's been given me too seriously if at all possible. I have had periods where I felt completely hopeless and questioned what the point was. Through the help of my friends and family I was able to pull out of those times and get back on track. I have also changed the way I look at life and what my priorities are.

I quit my corporate America job and went back to school to finish my doctorate in clinical psychology. I find having goals with a purpose has made me appreciate my life more than I did before I was diagnosed.

I plan on working with people with chronic illness, and I hope my personal experience can bring a better understanding to their unique situations. And of course, riding my bike helps immensely.

What got you into cycling such long distances?

There's something strangely addictive to cycling. The great cyclist Greg Lemond has a famous quote of "It doesn't get easier, you just go faster." And it's completely true. The more you ride, the faster and farther you can go.

For me, cycling is mental therapy. After a long ride I can feel physically exhausted and completely at peace at the same time. It's also a very social sport, where you meet so many different people and see places that you'd never see if not for the rides you do. There's a camaraderie among cyclists that's difficult to explain.

My first real long distance ride was the Register's Annual Great Ride Across Iowa (Ragbrai), which happens every July. I learned about it through a friend of a friend and decided that riding 500 miles in a week was a good idea. It was the 5th hardest route that year, full of large hills that you don't find in Chicago. It was so difficult my ankles swelled up for a week after I finished. But I was hooked, and have done the ride for 3 years now.

I just wrapped up this year's ride a few days ago, doing about 550 miles in 7 days. I've also done the Ride Across Indiana this year, which was 159 miles in 1 day. I finished #247 out of 1100 people and in the top 20 of women riders.

I'm at a stage now where I'm looking for more challenges, and am going to try my abilities at road racing and hope to do the Seattle to Portland ride next summer.

How has Crohn’s affected your cycling?

The biggest challenge with the crohn's and cycling is the fatigue. When I'm not doing well, I'm incredibly tired which makes it really difficult to get in the saddle.

I had to learn when I could ride and push through the fatigue and when to take it easy and not do the ride that day. Part of my problem is I'm incredibly stubborn, and have a difficult time slowing down.

There have been days I probably shouldn't have ridden but did anyway. I have learned that the first 10 miles are the hardest. And if I can get through those, it's smooth sailing after that.

Having fistulas also makes it difficult. But thankfully those are under control. I've been rather demanding with my GI and setting up treatments that won't keep me off the bike. Thankfully we have a great relationship and can work through issues that come up without causing me many setbacks.

In regards to the disease, do you do something special before an event to help you prepare for it?

Basically I make sure not to eat something that has a decent risk of setting off my guts. I have been incredibly lucky not to have many issues on rides. Or if i have, a bathroom or corn field has been nearby. I also watch what I eat during rides, staying away from nuts and other non-crohn's friendly foods.

If I do get hit with some pains, I slow down and take deep breaths until it subsides. I also tell myself "this will pass like every other time". And eventually it does.

A lot of people with Crohn’s Disease become dehydrated. Cycling takes so much effort. Do you find you have to do something special to keep from becoming dehydrated (more than the average cyclist)?

I think I do drink more than the average cyclist does. Most organized rides are well supported with rest stops where you can refill your bottles with Gatorade or water. I carry a baggy of a sport drink powder called Cytomax in my bike jersey. I've found it keeps me better hydrated than Gatorade or water.

Do you do anything special to keep your strength up?

I try to eat well. No fast food, no junk food, no soda. I keep to a mostly vegetarian diet and eat chicken to get protein to help my muscles recover. I know it sounds weird for a person with crohn's to eat lots of vegetables and fruit. But they only cause me mild problems and I find the nutritional benefit to outweigh the extra trips to the bathroom. Of course, lots and lots of carbs before a ride! What's Atkins?

What are your thoughts about letting other people know you have Crohn’s?

I've told pretty much everyone I know that I have crohn's. I constantly gauge their level of comfort in getting into more details. Some have never heard of it, so I describe it as being like an ulcer in your stomach but you can get them anywhere in your GI tract. If they want to know more, I tell them.

Some of my friends know all of the gory details of my disease, others know that I have it and that it causes certain symptoms.

I was open about it at work as well, which worked out ok for the most part. There are always a few people who have issues. I've just found that being open about it has worked much better for me mentally than trying to hide it.

I also think letting people know I have this combined with the cycling I do provides some inspiration for others to get out and do more than they think they could do.

What would you tell someone who has been recently diagnosed with Crohn’s?

Your life is not over! It's going to take some time to adjust to everything and learn how your body reacts to things. Everyone with crohn's is different, so figure out what works for you.

Ask lots of questions, do your research wisely, and find a doctor who you are very comfortable with. Crohn's can be a roller coaster ride, but try to keep your chin up.

It's all about your attitude and outlook. Yes, you will have times where you feel completely lost and depressed. But try to find your passion in life, whatever it is and use that to keep you going. And don't forget to laugh as much as possible!

Wow. Thanks Tiffany.


Finally

If you haven’t gotten the free diet journal I offer from the website, click here

If you’d like to tell your Crohn’s story and have it on my website, click here

I want to include the quote you will find on many of the pages on my website. I believe if you will develop the skill of putting this quote into practice, it will help you immensely in reducing the stress you feel from life and the disease. Here’s the quote:

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
Wisdom to know the difference.

I wish you all the best.

Till next time,

Ed Kalski

Health Disclaimer: The information on this site is provided for information only and supplied “as is.” It is NOT intended to substitute for the services of a licensed health care provider in the diagnosis or treatment of Crohn’s Disease or any other disease, condition, or injury.