Another Update – May 2010

•May 24, 2010 • 1 Comment

I was just re-reading my last post and realized I never came back and wrote about my Wisconsin trip.  We had a great time.  We went sledding with the boys and had a blast.  We almost killed our self on one hill that stops into a busy street.  But that just added to the excitement.  It was great seeing family, some I have not seen in over 5 years.  It was also great to talk to so many of them that have kept up with us over the past year through this blog.

I said in the previous post that I flew without a problem.  There was one change over that we had to do in Milwaukee and it was tight.  When we got off the plane my mom told me that we only had 10 minutes to get across the airport and get on the plane.  They were holding it for us.  So all five of us, with our luggage were running through the airport.  I had to go to the bathroom, and I really didn’t want to get on the next flight without some quiet time in the ever so clean public restroom of an airport.  But I wasn’t going to panic, we needed to catch this flight so I was just going to go with the flow.

When we got to the gate they were waiting for us.  We asked if we could run to the bathroom quick and the lady told us no way.  She was going to quickly send us out to the plane, but then we realized it was the wrong plane. 😛 They thought we were going to Green Bay so they were holding the plane for us, but we were going to Appleton and that plane was still a 1/2 hour away from boarding.  YEAH.  I got my quiet time and I was happy.

When we got into town we stayed with my parents.  I forgot they live in a old farm house that only has one bathroom.  One bathroom and 8 of us living there.  It was nice to not worry about this.  There was a time this would have stressed me out, but it was not a problem.  There were a few times that I was nervous, but I just calmed down and waited.

The only thing that happened on the trip that was difficult was the night we went to my grandparents house to meet the family.  It was very busy and there were kids-a-million running around.  My boys were having a blast playing with their cousins.  BUT there was only one bathroom.  (not a real big deal,) but it was off the living room, not the greatest place for bathrooms by the way, and the door did NOT lock.  The bathroom was not a small one either where you could sit on the can and hold your hand on the door handle to keep anyone out.  The toilet was 8 feet from the door.  I knew, as soon as I sat down to go, one of those kids was going to bust that door open and then out of shear terror of seeing me on the toilet, run away screaming, while leaving the door wide open.  So I had my brother stand guard the first time.  Then I had to go again so I got my cousin to stand guard, but she had to leave so she got her dad to come and stand guard half way through my round.  It was like the changing of the guards, only not so prestegious.  Then I had to go one more time before we left, so I had my Uncle stand guard again.

I think what made it hard is people notice when someone is standing in front of a bathroom door.  I guess this is not a ‘normal’ place to hang out.  So they ask, “Why are you standing there?” and then my guard would respond.  “I am guarding the door for Chaz.  He has to go to the bathroom.”  And everyone would understand.  But I hate it that I had to go 3 times while we were there.  I feel like people are watching me to see if I am REALLY healed.  So when I have to go to the bathroom a lot I feel like people are thinking to themselves, “Hummmm, I guess the surgery didn’t work.”  I need to get over it.  I know the surgery worked and I know people aren’t really pondering all of this in there head.  Like my bathroom time is the concern of all people that I know.  It is hard, because for so long everyone did know my bathroom issues, and now I feel like I don’t want them to know anything, or if I have a bad day or night I don’t want people thinking that I am not doing good.  Hope that makes sense?

All in all the trip was wonderful and we will be going back later this year for a nice time with the family at a resort.  I am looking forward to it.

February Update

•February 20, 2010 • 5 Comments

I can’t believe that I am scheduling my one year visit back with my doctor. Where has the time gone? A year ago at this time we were leaving for our cruise and I was still really sick. We were talking about taking another one the other day, because it would be much different this time around.

Life has gotten MUCH better for me since the surgery. I wanted to give some updates for those who are wondering what happened to me.

First I will give you some of the good news. My life is 110% better. I am so thankful for everything my doctor has done for me and how much God has healed me. I would do it all over again if I had too. I feel I have gotten my life back to almost 100%.

A few weeks ago we flew back to Wisconsin for a visit. I had not flown in almost 5 years. The trip went off without a glitch. I even flew on four different planes without even once a butt flare up or anything. It was awesome. ( I’ll write more on the trip at a later time).

Work has been great. I still have many different shows and events that I have to work at and I no longer have the anxiety that I used to have. It has made work very pleasant.

Eating has been a blessing and a curse. I can eat just about anything now. That is the blessing. Because I can eat just about anything, I have eaten everything and my weight has shot up. Almost 20 lbs over the past four months. Most people that suffer from Crohns or ulcertive colitis could stand to gain some weight. I am not one of those people. I think I was already the fattest uc patient in America to begin with. So 20lbs I could have done without.

Because of this I have tried to start working out, but with my work schedule, it is almost impossible. Which leads to some of my frustrating things I still have to deal with. I can’t run any long distance. I have tried a couple of times, but every time, I have to go to the bathroom within the first mile. Aggghhhh! I really miss running, but my body won’t let me right now. It makes sense, if you think about it, next time you are sick and have diarrhea real bad, try to go out and do a five mile jog. I think we all know where that little story will end. But I am hoping that some day I will be able to run long distance again.

Along those lines is lifting anything heavy. It is hard to lift and squeeze your bum together at the same time. Or there are times that I sneeze or cough and “sprinkle” a little mud down below. (a friend of mine that has gone through the same surgery told me that he had to wear panty liners in the beginning to help with that problem. … really? … panty liners? … now I have to be the fat man coming down the street with panty liners on? Can I feel any more awkward than that? I don’t know if I am ready to make the cross over to panty liners…) So exerting energy can be a real challenge. It doesn’t happen all the time, just at the worst possible place. Like the other day at work I was playing hackey sack with some if the guys while on break. We were having a blast, but then I realized, too late, that stretching and jumping and lifting your leg at break neck speeds makes it easy for “sprinkles” or even “small showers” to happen.

My only other real bummer is I still have to wear diapers to bed at night. There are many nights I never have an accident but there are just as many that I do. I will be glad to be done with that someday. I also still get up 2 or 3 times at night. I would love to get a real night of sleep. The most I have had at one time in over two years is 6 hours one night. The average is about 2 to 3 hours at a time at night. This is much better than every 45 minutes like I was last year, but now where I want to be for long term.  I think some of the problem goes back to eating.  I have slipped back into the habit of eating late at night.  I think that wears on my system and causes me to go to the bathroom throughout the night more, than if I would just make my last meal at 6:00 every night and then not eat again… yeah right.  Watch survivor and and not eat, Lost and not eat, Amazing Race and not eat, Biggest Loser and not eat…  I think I watch too much TV.

Another small bummer I have come to live with is my inability to eat cinnamon. When I do it will rip me a new one. You might as well poor acid in me, because it will do about the same. I never new how much stuff had cinnamon in it that I liked; pumpkin pie, apple pie, snicker doodles, cinnamon rolls, many cereals…. I will miss the cinnamon. I’ll also miss Cinnabons, but that is probably a good thing.

First Big Trip in Four Years

•October 20, 2009 • 3 Comments

I wanted to share some good news. I traveled for the first time in four years. We took a trip up north to Atlanta for a few days. There were a few milestones with this trip.  The first was riding in the car for eight hours. I did just fine and I didn’t panic. I didn’t have any reckless driving trying to get to the bathroom somewhere. I also ate everything I wanted and I never had any issues. It was crazy!! I thought for sure I would have some rough times, but it never happened. Also at one time in the trip I went five hours without going to the bathroom. That has not happened in more than a year.

I had a great time with my family. For the first time in years my bathroom issues didn’t interrupt our time together. I felt ‘normal’ again.

Here are some pictures of family that we stayed with. Then we headed downtown to Atlanta to stay with our best friends Larry and Kathy. It was great spending time with them and their kids.

Our aunt and uncle's house

Our aunt and uncle's house

Harley golf cart

Harley golf cart

Driving the golf cart around

Driving the golf cart around
Riding the Zip-line

Riding the Zip-line

Lori with cousins Michael and Connie

Lori with cousins Michael and Connie

Little ping pong action

Little ping pong action

Lori and the boys

Lori and the boys

Cooking Smores.  YUM!

Cooking Smores. YUM!

Lori and me :-)

Lori and me 🙂

Lori and Kathy

Lori and Kathy

Hanging with friends

Hanging with friends

Larry and Kathy's backyard

Larry and Kathy's backyard

We have some great video too, but WordPress makes us pay now for video play, so they are on our Facebook account. Check them out they are really funny, especially Lori riding the scooter down the driveway. 🙂

Some Interesting Facts

•October 9, 2009 • 4 Comments

So I have been doing some research and I thought some of you would find this interesting. I was running some numbers the other day and I was shocked at what I discovered.

So here it goes. If the average person has one trip to the bathroom everyday to poop, they would go 365 times in a year. But I would guess that is not the norm. Most go about 3 times a week. (what is wrong with you people?). So the average would be about 156 times a year. Most of you reading this will fall between those numbers. I figured out, with my daily average I have now, I will go 4,750 times this year! For those of you that go everyday, it will take you 13 years to catch up to me. And for those of you who only go 3 times a week it will take you 30 years to accomplish what I do in one year.

I also figured out that I will spend about 32 days on the toilet this year. 1/12 of my year will be spent in the bathroom. I need to get some good reading material. I will also flush 7,600 gallons of water. Could that fill a pool? (not like you would want to fill a pool with that water :-). And finally I personally will use 156 rolls of toilet paper this year.

But I will take it. Even though this sounds bad, it is good. I am doing better. Over time these numbers will go down. My goal for next year is to keep it under 3,000 times. If I can do that then I will only be 8-18 years ahead of the rest of you guys.

Movin’ and Grovin’

•September 10, 2009 • 6 Comments

We celebrated our sons birthday yesterday.  I can’t believe he is 10 years old.  From what I hear from others that have older children, I won’t believe how fast the next 10 years will go either.  Life moves fast.  As the great philosopher Ferris Bueller once said, “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” I don’t want to miss life.  I want to live it.

The past year has been such a roller coaster of emotions for me.  From really high to depths I thought were not possible.  Living with a disease is incredibly difficult, never predictable, and always putting your life in a constant state of change.  I thank God for the surgery that I was able to receive and the freedom it has giving me and my family.  I hurt for those who do not have the option to have surgery to remove the pain.  I feel for those who are not able to escape the ‘beast’ that hovers over their life like a cruel puppet master.  I wish there were options for them to take to free themselves.  But even in those tough times, we have to look for the good.  When I was at my lowest point I still had to find something to hang on to.  For me it was God and my family.  I knew I wasn’t going to go through anything that God knew I couldn’t handle.  As stretched as I felt, I was not going to reach a breaking point, because deep down, I wanted to live.  I wanted to celebrate birthdays and anniversaries and holidays with my family.  I wanted to grow with them and teach them and learn from them.  I didn’t want to miss life.

I feel that I am beginning to live a ‘normal’ life again.  My bathroom issues are falling further and further into the past.  Yeah, I have a hard time at nights.  I still go about 10-12 times in a 24 hour period and still have to get up at night at least once, sometimes twice in the middle of the night to go.  But I am getting better.  I am seeing progress everyday.  My relationship with Lori has also improved greatly.  We both have begun to adjust to the ‘new’ me and are settling in well.  Our relationship has turned another corner, another chapter, and it looks much brighter than it has in a long time.  I am starting to feel normal again.  I feel like I am getting back a handle of things in my life and enjoying it.  I am starting to break out of my bubble that I have hidden in for the past few years and live life without fear.

For my friends that read this that are going through the surgery or are about to go through, IT IS WORTH IT.  It is an incredible recovery with all kinds of things to deal with, but now almost 4 months out, I love it.  Hang in there, it gets better.  For my friends that read this and are still dealing with the ‘beast’ in their life, hang in there.  Find the good in life and hold onto it with all you have.  Seek out ways to get better and you can.  And lastly for all my friends that have journeyed with me, thank you.  Your love, support, encouraging words have helped me and my family through dark days.

Been Awhile Update

•August 11, 2009 • 5 Comments

I am now almost 3 months out from my Take Down surgery.  Life has been going really good.  I am still noticing changes for the better every day.  Last night I slept for 6 hours straight.  That is the most I have slept at one time since last November.  Yeah for sleep! I still go about 12 – 14 times in a 24 hour period.  I will be glad when that goes down to more like 6 – 8 times a day.  But the urges are getting easier to deal with.

I am able to eat more things and they don’t bother me as much.  I still can’t eat Hot Dogs.  Tried the other night, still not good.  Now I notice that if I eat 4 or 5 meals in a row that are bad, it will finally catch up to me and start to bother me.  so I can have a ‘cheat’ meal every once and awhile and it really doesn’t bother me.

The worst thing I have dealt with over the past three months has been a few accidents while I was sleeping.  It has been very frustrating.  One night I really had an accident.  We had to clean the sheets and everything.  It was a horrible reminder of where I was 6 months ago.  Luckily, in the past month, I have been accident free.  I am hoping the accidents are a thing of the past.

The other thing that I have had a hard time with is my emotions.  I have been very angry lately.  Very short with Lori and the boys.  I don’t know why?  Lori and I have never fought in our marriage, but lately we seem to be getting on each others nerves.  I wonder if it has something to do with me being sick for 5 years and her kind of stepping into the leadership role for many things while I fell to the side.   For the past 5 years I have been able to remove myself from anything with the family whenever I wanted.  Lori always picked up the place of me because she knew I was sick.  Now I am not sick and I feel pressure that I have to do everything.  Where as before I could always just leave and go to the bathroom, it was my escape from anything.  I never had to do anything if I didn’t want to.  I would just say, “I have to go.” and leave, and Lori knew she was going to take over and finish whatever it was we were doing.  Now I can’t do that, and believe me Lori is over me talking about being sick.  There used to be A LOT of grace for me before the surgery, not so much now.

Any who, the Jury is still out on that one.  I really feel like I am the one that is edgy, maybe it is from lack of a good night sleep.  I don’t know, I’ll keep you posted as I grow and figure this out.

I will try to update more.  They came out with an app for my i-phone to let us log into WordPress and update our blogs.  I am going to install it later today and play with it tonight.  If it works, I will try to post more often.

7 Weeks Out Post Take Down

•July 10, 2009 • 10 Comments

The past week has been great.  Work has been a blast, family life has been a blast, life has been a blast.  I am so happy with my surgery results.  Things continue to get better and better.

My scar still looks nasty, but that is the least of my worries.

7 Week Scar

7 Week Scar

I am still careful with what I eat.  I have tried some new things here and there (like four Mickey Ice Cream Bars, mmmmmm, ice cream.  Kind of hurt me later, a little.) and have handled most of them very well.  My group of ‘good’ food is getting bigger.  I’ve  had no butt burn in over two weeks.  I still deal with butt itch though.  Sometimes I could scratch my crack raw.  But that is getting better, so time will tell how that goes.

I’ve had NO panic attacks at work.  I have had urgency’s while in show, but have remained calm and just waited to get off stage and make it to the bathroom.  It has been a great feeling.  I even got a Crew Chief position at one of the stages.  I never could have done this position before, but now I am able to.

Night is still hard for me, but it doesn’t start until around 8 or 9 at night.  It, like everything else, is getting better.

My mind is finally catching up with my body and realizing that I am healing and getting better.  This has been a relief.  I am still learning and training my body to handle everything the right way and it is working.  So if you are going through this or are about to go through this, hang in there.  Life gets better.  Things will pass and new things will come and better days will be ahead.  😛