Mid-Week Update and More Jazz

Greetings all! This is your midweek update, first of all let me congratulate you all as we have surpassed 50% of our Take Steps goal and are currently at $3340 $3365! Great job you guys, we are almost there!

On a similar note do not forget that this weekend, May 7th will be the day that we are holding our yard sale fundraiser at Allison's place. If you have anything to donate to the cause or simply wish to hang out please contact Allison so that she can give you all the pertinent info or contact me and I'll do the same. Darrin is also more than happy to pick up any large objects that you can't transport so please contact him if you need someone with muscles and a big truck. Contact me if you need someone with a dolly and an excuse on why I can't lift heavy boxes.

On to other things!

Upcoming Events:
MAY 19TH: Pediatric Crohn's: Finding the Right Path to Care. For info click here.
MAY 19TH: CCFA TAKE STEPS LA Presents: Ben Morrison: Pain in the Butt. For info and tickets go here.
MAY 21ST: First Annual Digestive Health and Wellness Expo.
Time: 1:00 pm to 4:00 pm
Where: MOTION OC
17332 Von Karman Ave, Suite 120
Irvine, CA, 92614
Talk to health professionals, hear about acupuncture and yoga and check out the latest body wellness techniques!
For more information contact Joslynn at jbroun@ccfa.org

This weekend

This last Friday I attended a concert with friends and I am happy to say that not only was it fun but my body was amazingly cooperative. I admit that I apprehensive about going to the venue as it's often the case with me that the later the time of the day the frequency to go to the bathroom increases. The venue was scheduled to start at 8:30 pm and end sometime after midnight. It ended closer to 2 am.

However I had already bought the ticket and had already let my friends know that I was going to carpool with them since the venue was at the Troubadour in West Hollywood where parking is virtually non existent, and not being one to disappoint I decided to throw caution to the wind and go. After all I'm still young and it would do me no good to stay at home and then wonder about all the "what if's," so I went. I had a couple drinks (Jack and Coke, my go to drink) and enjoyed the music and atmosphere never really worrying about the possibility of having to use the restroom. That is not to say that I had not already mapped out the location of each and every single restroom but that was the furthest thing from my mind as there were better and much more interesting things to think about, the band for one and... well other things. Let's just say that blue hair was involved. But I digress.

Since my friends are really close friends with the headlining band we stuck around for an extra hour before heading out to Canter's Deli where at 3 in the morning I decided to pass on the pastrami, which although heavenly delicious was a bit too heavy for me, and went with a burger. I finally got back to Anaheim where I spent the night at around 4 in the morning and somewhere shortly after went to sleep, waking up by 8 with no difficulty nor feeling the pains and aches that I usually feel after a long night, which I suppose means that my body is getting healthier from where it was even a year ago and quite possibly thinking positively during the night helped as well.

I suppose that the moral of this story is to not be afraid and enjoy yourself. Be free of that fear that all of us experience when we are confronted with something that is outside our norm and simply go with it. Worst case scenario is that you crap you pants, best case scenario you leave with good and happy memories as well as new friendships and an experience well worth sacrificing your security net for the night. And yes I'm ready to do it all over again.

Exercise, activity, staying busy and you.

No one can deny the virtues and benefits of exercise and why it's good for you. Unfortunately for most of us the social aspect of our illness makes us both unable to exercise as normal people would or even want to go out and perform any type of exercise due to the fear of having an accident somewhere along the way. However it doesn't have to be that way. Don't think of exercise for you as being the conventional exercise of walking around the block, running the track or going to the gym. After all social phobia is an unfortunate side effect of what we go through for many reasons, body image, fear of soiling yourself, embarrassment or a combination of those or other things. In cases such as those or in cases where anemia or other attributed ailments prevent you from venturing to far from the comfort and safety from home then you must take different steps to ensure that you too can get some exercise not only to strengthen the body but to help the healing process and to soothe both the mind and soul.

You can always buy exercise equipment but if you are like most people you will use it once and then discard it with the promise that you will use it again tomorrow which then after so many tomorrow turns to next year. You can also buy videos and video games as well but those also require a commitment and time set aside that you may or may not have, as well as in some cases, competing for use of the television from your kids or significant others.

Therefore what may be the best solution? Keep in mind that this is not about losing weight, about trying to look good in a speedo or even about training to run the L.A. Marathon. No we are attempting to create an exercise regiment in order to stimulate and enhance your body's healing processes, to keep your mind occupied and aware from the constant nagging thought that you might have to go to the bathroom and above all to keep you sane and to control you illness, to get independence from it and not let it control your life.

So then what do we do? Simple. Modify your daily activities to allow for some exercise within them. What does this mean? It means the following. If you are going to make mashed potatoes for dinner don't buy the pre-made ones but instead make your own. It takes longer but the process of mashing and whipping them will give you some exercise, it may give some soreness as well but the much improved taste of homemade mashed potatoes is so much more worth it. If you have dishes to wash then wash them by hand. Not only will they be free of the occasional washer crud but while you wash and dry them your mind is free to zone off and relax in a strange meditative stage.

Or if you are doing nothing more than watching television then whenever a commercial appears take the time to get up and stretch and walk to the kitchen, the other end of your house, apartment or studio. In all honesty it's irrelevant what you do and how you do it but what is important is that you do something other than simply do nothing. And once you are comfortable not simply sitting around and waiting for the urge to go to the restroom to arise then we can start talking about going outdoors and running the track or walking to the market or maybe even running the L.A. marathon.

So you think you have a flare up

You wake up one morning and your gut is hurting, you rush to the bathroom and know that this is the beginning of an all day tribute to the porcelain god. You wonder what you can do, that is other than stock up on magazines, Gatorade and set up an Internet line to your toilet. Here are a few suggestions, keep in mind that every individual is different so something that works for someone may not work for someone else.

1. Dietary:
A light diet may be helpful, broth, jello, decaffeinated teas and Gatorade. Remember you will be losing liquids, minerals and electrolytes that need to be replenished. Even if you think that it's a good idea to avoid food because it may cut down on bowel movements it's not. If anything it can lead to dehydration, mineral deficiency and possible anemia. That doesn't mean that you should order a bucket of KFC friend skins and down it all with a gallon of cola but instead make conscious food choices that will help you see what you can and can't tolerate in order to avoid those foods in the future.

2. Exercise:
I know you want to curl up in bed, on the couch, in the tub, or on the toilet and die but don't. Try to get minimal exercise in order to promote digestion and healing. I'm not talking about running a triathlon, conquering Everest or cycling the Tour de France, but walk around the block, walk to dog, or take care of any low impact chores that may get your mind off the pain in the ass that is a flare up. Trust me it's good for you.

3. Clothing:
Dark clothing, dark underwear, NO WHITES. Because there is nothing more embarrassing than people informing you that you accidentally sat on a 99 cent burrito from Taco Bell. It's bad. I am aware that many of us would rather not leave the home when a flare up occurs but in case you have to, for say an emergency such as saving the world because your PIN number happens to be the code that the alien invaders need to avoid wiping us out, well then dress comfortable, but not in such a fashion that someone may mistake you for an animated pile of laundry.

4. Dating:
Cancel the date. No seriously, cancel. Tell them that your car blew up, that you were abducted by space pirates, that you were drafted to fight the war on bad literature turned into horrible movies, anything to get you out but that will still allow you to have a second chance date. Unless they are aware of your condition and are willing to come over and nurse you to health, in that case then play the sympathy cards. Results may vary.

5. Meds:
Yes we all hate taking them, we all hate the side-effects but even during the worse of flare-ups do not fall into the temptation to self medicate and double your doses hoping it will clear things up. It probably won't work and may instead cause your symptoms too worsen. Take your medications as directed unless told otherwise by your GI. That's your GI and not the guy across the street named Doc X who got his GED in Medicine from Online Diploma Mill U. It doesn't work that way. So take as directed and if things get really, really bad then it's off to the ER for you.

6. "Herbal remedies":
Yes as someone with an IBD you qualify for a card. Yes you live in state where you can get said card and remedies. I am neither for nor against them as they may or may not work in relieving pain and other ailments related to IBDs. But if you choose this path remember to have plenty of light snacking materials around as well as plenty of electrolyte replenishing liquids as the ensuing munchies may give you the desire to eat anything in sight. The liquid replenishment is for the liquid to be lost when your body realized that you just ate everything in sight.

7. Transportation:
If you haven't already try to get a handicapped placard or plate. This will help in case that you have to leave home to buy something. If possible get a driver but that can't always be helped. I know that some will find it strange to get a disabled person placard but it comes in handy in cases where your body needs to go and there is nowhere to park. Trust me on this. It's also helpful at sporting events, crowded malls on Black Friday and at Disneyland. Use it responsibly.

8. Alcohol:
Avoid during a flare. I don't care what the French say, avoid it. It's bad. Trust me on this.

9. Toilet paper:
This is a tricky issue since even the softest most gentle of toilet papers will turn into sandpaper if used at the frequency that it's used during a flare up. Therefore I suggest a combination of baby wipes, soft toilet paper and if possible getting a bidet seat or sprayer for your toilet. Your butt will thank you and that will be more than enough to offset the cost.

10. Friends:
Have them come over and throw a bathroom party. Play games, watch movies and come up with healthy food choices for you. I know that this sounds silly and may work better for women than men but hell guys can throw a sports themed one.

I am aware that when you are flaring you just want to die but all the same we have to try to break away from the anti-social aspects of our disease and conquer it instead of letting it conquer us. We have to own our disease, no matter how hard it is, no matter how daunting it may seem you can do it and live as normal of a life as you want it to be.