First Big Trip in Four Years

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

Harley golf cart

Driving the golf cart around

Riding the Zip-line

[caption id="attachment_397" align="aligncenter" width="497" caption="Lori with cousins Michael and Connie"][/caption]

Little ping pong action

Lori and the boys

Cooking Smores. YUM!

[caption id="attachment_395" align="aligncenter" width="497" caption="Lori and me "][/caption]

Lori and Kathy

Hanging with friends

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

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’

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

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

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

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. 

Back to Work

Just a quick update on my progress.  I returned back to work this week and it has gone really well.  I don’t want to jinx myself, but the past two days have probably been the best two days at work yet.  I loved the freedom I had to do whatever I needed to do, without worry of needing a bathroom.  It was great seeing friends again and catching up with them.  I am hoping for even better days ahead.

It has been great to have so many people helping and praying for me along the way.  The other day I was trying to quickly cut the backyard before work, my neighbor saw me and offered to jump in and help.  He knew that I was getting ready to head to work for the first time, and he didn’t want me to be stressed before I left.  Lori and I love our neighbors.  We are really blessed to have good neighbors all around.  They have been very supportive and helpful through all of this.  It was a great start to my first day back.

Beach Trip – Five Weeks Post Take Down

I return back to work this weekend, so we took a few days to go to Cocoa and enjoy the pool and the ocean.  My J-pouch was very good to me while we were there.  I drove all the way there with out any incidents (1 hour drive), I went swimming in the pool, swimming in the ocean, and played around the hotel.  It was an awesome feeling to be able to do all of that with the family.

Over all the whole trip was an A+.  The ocean was a little weird on my J-pouch at first.  I don’t know this for a fact, but sometimes I feel like my pouch is moving around inside of me, I don’t know if it can still move around, but it feels like it is.  So, when I jumped into the ocean, I guess all the water pressure pushing on me and turning me all over the place, made my pouch feel VERY weird.  It took awhile for the body to get used to the pressure down there.

I don’t know if other J-pouchers experience the same feeling?  Sometimes when I sit for awhile and then stand up, it feels like all the blood rushes to my butt.  Kind of like a when you feel all the blood rush to your head, you feel all that pressure and it takes a second or two for it to level out.  That is what I feel, but it is in my butt.  Most times it goes away after a few seconds, but sometimes it lingers for 10 minutes or more.  That is annoying, real annoying.

Nights are still difficult for me.  We are continuing to try new things to help with my nights.  I am nervous about going back to work tomorrow because I am working a PM shift, so most of my shift will be during my worst hours. (4:00 to 11:00)  It will be a challenge that first night back.  I hope to have a good report later this week.

Here are some pics from the trip.  Enjoy.

Ready for some waves.

Taking off!

Shipwrecked studs.

My Love

Doctor Visit – 6/24/09

I can say this visit was much better than my last visit. (read it here)  Lori went with me and that help me to stay calm.  Usually when I get nervous I crack jokes, so I was crackin’ them like crazy.  Lori and I were dying laughing in the office.

My doctor came and and started checking my stomach and scar area.  “Everything is looking good,” he told me.  “Roll over on your side,” was his next statement.

I knew what that meant.  Gulp!  Here we go, some finger checking good time ahead.  I can say it was MUCH better than last time.  I didn’t feel as much pressure and I just tried to relax and breath while he checked me.  He said that I was still dilated and my opening was nothing like last time, so there was no need for any further stretching.  This was good news for me.

He told me it would be good for me to self dilate from time to time to keep the anus stretched.  I told him that I had tried twice over the past few days, but I wasn’t very successful.  He asked me if I felt the staples up in there?  I told him that I had not.  I didn’t realize that I will have staples in there for the rest of my life.  Where the J-pouch and the anus connect there is a ring of staples that, apparently I can feel when I dilate properly.

My Doctor gave me some pointers to help in my dilation process.  First, it is better if I don’t have anything in my pouch.  I made that mistake the other night.  I put my finger in and my butt popped like a balloon and I pooped/sprayed all over my hand.   Thank God I had a glove on!!  So having an empty pouch can prevent that.  Second, I don’t have to dig around up there, just get my finger up to my knuckle to stretch that area where the pouch and the anus meet.  Third, wear gloves, use lubricant, and RELAX.  The last part is the hardest.  How do you relax during this?  People have told me that you learn to relax and it becomes easier.  I’m just glad that I don’t have to do it every day.

All in all it was a great day.  I am seeing so much success and improvement every day.  I am so thankful for my doctor and the surgery.  It really has been a blessing and really has given me my life back.  Thank You Jesus!!!

The Ups and Downs Continue

I really have good and bad (sort of) news to share with all of you.  First the good news.  I had a wonderful week last week.  I did many things that I would have never done with my UC before the surgery.  I went on a 6 mile bike ride with the family.  We went to Kelly Park and went tubing down the river about 4 times with out any incidents.  It was weird, I didn’t even have to look for the bathrooms when we first got there.  Normally, anytime we went somewhere new, I HAD to know where everything was.  It really is a new freedom.  We also went to Wekiva Islands and went canoeing with some friends and hung out there for the day.  It was a lot of fun.  I have driven for over an hour in the car without any problems and have even slept a few nights for more than 5 hours without getting up!

Spending the day with friends

Canoeing with the family

I am very excited about having the surgery and I really wouldn’t change it.  I have really good days, when I don’t eat much the night before.  I try to stop eating after 7:00pm.  My system usually empties by 6:30am and then I have until around 5:00 that night to do what I want.  Night is still tough and I am working on stretching myself at night.

With all that said, there is some sorta bad news.  I had two accidents already at night.  One was very small, I think I farted before I could catch it while I was sleeping.  Unfortunately I can’t fart, ‘things’ come out when that happens.  So, I just dismissed it as an accident.  Then the other night I had more of an accident.  There was a lot.  The weird thing is I don’t remember getting up and going to the bathroom, I just kind of woke up and was sitting on the toilet going.  I guess I was ’sleep pooping.’  Has that ever been documented?  Anyway, I was finishing up and pulled up my underwear and surprise!  I had a gift for me in there.  I am not really sure where the accident happened?  Was it before I made it to the bathroom, while I was sleep pooping, or did it happen as I was sitting down on the toilet and started just a second too soon?  Not sure I will ever know, but it was still discouraging.

Then I have noticed in the past day and a half that my urges are getting more and more intense.  I am starting to feel a little like I did the first and second week.  That probably means one thing… “Dilation”!  I don’t want to go to the hospital again so……..I may have to start dilating myself.  I told Lori tonight that I need to try self dilation to see if that relieves some of the pressure, and if I couldn’t do it she would have to do it.  She told me, “NO WAY!”  So, if I can’t do it, and Lori won’t do it, then we are going to call our good friend Kathy (the nurse) from Atlanta to come down and do it. LOL

I go Wednesday to the Dr. so he can ‘teach’ me.  I am not looking forward to that visit.  I used to think the dentist was the worst doctor to visit, but I have changed my mind.  Fingers in my mouth?  Fingers in my butt?  Not too tough of a decision, you think?  I just hope the dilation works…..it did the last time!  I don’t want to feel this close to crapping my pants again.  I don’t want to go back to those days of all the pressure and feeling helpless.  If I have to dilate every so often, then bring it on!  I will do it to give me better health!  We’ll see……should be an interesting night at the Burton’s!!!!

Three Weeks Out – Post Take Down

Today is the three week mark of my take down surgery.  Things have really been going well.  I have been out many times without any problems.  It is neat to feel ‘normal’ again.  My stomach muscles are just about all healed up.  The other day at the pool I could feel them hurting when I was climbing out of the side of the pool.  I guess you really used your muscles to pull yourself out of the water.  My scar is looking as good as a nasty scar can look.  I still have “Lumpy Lefty.”  I put a picture below to show you all a better angle of the lump.  I will be glad when that all levels out.  My stomach looks like a butt implant gone really bad, but I will take it over living with UC any day.

"Lumpy Lefty"

Scar at week 3

I am still learning about eating.  Last night I did not make good choices and today I am PAYING for it.  I have full butt burn back in action.  I haven’t really had any butt burn in over a week, but today I feel like I did the first week.  Ouch, it really hurts.  I was down to hardly using any cream this past week, but today I am lathering it on.

I still have a hard time at night.  I went out the other night and it was better than other times, but after an hour, I really needed to get home.  From about 5 or 6pm at night until 1 or 2 am I go about every hour.  I am hoping to get that under better control soon.  I return to work soon and I will most likely be working those hours, so I really don’t want to be running to the bathroom every hour at work.  I am going to try and not eat past 6:00pm and see if that helps end my bathroom time earlier.  We will see.

Mentally I have been doing MUCH better with the recovery.  My Dr. told me that the mind is the last thing to heal and I agree with him.  Physically I am healed, but mentally I am still healing.  When my body starts to have a pain or a feeling like I have to go to the bathroom, immediately my brain kicks into my UC days and starts to take over.  I really have to re-train my brain not to handle those feelings like that anymore.  That takes time.  It amazes me how much the mind can recall and repeat something that it has been conditioned to do over and over again.  I am seeing improvement, but at times I feel like I am learning to walk all over again.

A Good Time Out Today

So I have been turning corners everyday.  It has been exciting to see the progress.  A friend of mine is under one week out from her take down, and she told me it is really rough on her.  I feel for her, because I KNOW how difficult that first week can be.  I realized that I became like an infant that first week: eat, poop, cry, sleep, eat, poop, cry sleep…  That was all I did for the first few days.  It wasn’t until mid way through the second week that I started to see real progress.

I went to the hospital yesterday for my early morning “stretching.”  I actually had what’s called a ’stricture’, an abnormal narrowing of a bodily passage.  Scar tissue can form where my small intestine is attached to my anus….narrowing the opening.  This is probably what’s been causing my pressure down there.  While I was getting prepped I ran to the bathroom and when I came out, Lori was talking to the Dr.  He was telling her that she or I could do this at home, we didn’t need to come into the hospital and be put to sleep for it.  Lori and I both were like, “Nooooooo, nooooooo, noooooooo.”  Apparently the ‘tool’ that he was going to use can be purchased at local, ahhhh,  “special” stores.  Stores that Lori and I don’t frequent.  Hopefully we don’t need to buy anything for the future.

I had another major corner turn today.  I went out to our local shopping area, Waterford Lakes, for three hours today.  My panic attacks were mild.  I did have to use the bathroom once, and it was a little rough, but within 5 minutes of leaving the bathroom, I was back to something that was tolerable.  It was a huge step for me.  Lori was so excited she started crying in the car on the way home.  It felt good to be out, not completely worrying about a bathroom every second.  We will continue to ’stretch’ my mental ability to travel more and more each day.  We are hoping for a day at the beach soon.

We also went on a walk tonight with some friends in our neighborhood.  Actually Lori and her friends ran it with the kids, but I walked it with my friend Dom.  We walked 1 mile out from the house (that is REALLY far for someone who couldn’t go three houses down three months ago in fear of having an accident.)  I had to fight some urges to go to the bathroom, but that is becoming a norm of getting used to the pouch.  The real celebration was me not panicking from being so far from the comforts of my house.  Knowing that I couldn’t get home ‘quick’ usually scares me, but tonight I was calm and just waited until I made it home.  Yeah   Never thought I would be happy to tell people that I can hold my poop.

Two Week Post Take Down Surgery

Today is my two week mark from my take down surgery.  It has been a crazy two weeks with my emotions all over the board.  I can say that I am doing much better tonight than I was a week ago.  It has not been an easy road, and it is far from over, but I am seeing improvement, and that is a good thing.  Here are somethings that I have learned over the past two weeks.

Butt Burn is the most painful thing I have ever felt!  Nothing can accurately describe the pain from butt burn.  The closest might be hot, thick, liquid with sharp chunks of glass.  Even that seems easy compared to how it really felt.  I tried a lot of creams and remedies to help fight the burn, but nothing seemed to work until I found Ilex.  (A friend from Texas helped me with that one, I owe him a huge thanks for the advice.)  Within 8 hours of using the paste I was about 80% better.  It was amazing.  For those of you who read my blog and are preparing for surgery, I would try the Ilex if the other creams do not work.  Ilex is great, but it has it trade off.  Ilex is a butt paste, it is like skin in a tube.  When you put it on your body, it sticks.  My first advice, and the most important advice, is get your spouse, significant other, your REALLY good friend, or a good mirror and shave your self down there.  If you do not you will have dingle berrys of biblical proportions.  This stuff does NOT rub off, it clumps up.  Trust me, shave.  Another issue is the stuff really is paste.  Your butt cheeks will stick together.  You have to separate your bottom before you go, that is kind of a weird feeling.  Then when you wipe, the toilet paper can stick to the stuff, so now you have clumps of paste and clumps of toilet paper down there.  The first few days I took about 3 or 4 showers a day to let the hot water run over that area and loosen the paste so I could get it off my body.  Great stuff, just kind of messy.

I have also learned that what I eat effects my outcome.  In the first few days I ate everything and anything that I wanted.  I love to use food to comfort my woes and I had many woes.  I didn’t realize that my food was not helping my woes, but adding to them.  Two days ago I watched what I ate all day.  I was very selective in what I ate, and I had the best day since my surgery.  Everything was clicking along just great.  Then yesterday I decided to eat whatever I wanted.  Between lunch and dinner I had 5 hot dogs, chips, Mac-n-cheese, 2 cookies, yogurt, cake, ice cream, cheese curds, and some soda.  Yeah… that wasn’t smart.  By the end of the night my butt burn was returning, my bathroom times increased by almost double and I was just over all feeling horrible.  Today I watched what I ate again and it has been a great day.  So food is very important to how you feel.  I have to eat simple meals.  One or maybe two things like: A baked potato, chicken and rice, toast, single slice of cheese pizza, small salad, something like that.  I can’t do the 6 different items at one sitting right now, that is too hard on my system.

The mental battle is still just that, a battle.  I have done better, but it is going to be a long road for me.  I still panic when I am out.  I have gone out by myself and had good success, but I still have panic attacks, and I still feel like I am going to crap in my pants.  I hope these subside in the next few weeks, time will tell.

I am currently averaging 10 trips to the bathroom in a 24 hour period …..when I eat right.  Sometimes I actually have solid looking stool.  That is a first in 5 years!!

Over all week two has been nothing like week one.  I have seen many things get better.  I notice that I am holding more in my J-pouch before I go to the bathroom.  It isn’t a lot, but it is more than in week one.  I am looking forward to week three to see what else gets better.

I have to go to the hospital tomorrow so the Dr. can ’stretch’ me down there.  (Read my last post if you don’t know what I am talking about.)  I hope that helps and that everything goes well.

Here is a pic of my scars.  There is a scab that has formed on my last scar, but that should heal in the next week.  Over all the scaring isn’t as bad as I thought it would be.  The worst thing is the large fat lump I have on my left side.  Maybe my new nickname will have to be “Lumpy Lefty.”  My Dr. said it should go down over the next year, YEAH fun time swimming this year.

2 week post takedown

Staples out, Finger in

I went to the Doctor the other day to have my staples removed from my stoma site.  I figured it would be a nice quick in/out visit.  Pull out my staples, chat a little, and be on my way.  I wasn’t feeling good, because I was having my anxiety attacks and everything.  I went back to the exam room and one of his associates came in to chat with me.  We talked a little about how I had been feeling and what may be causing it.  Yada Yada Yada, then she had me lay down on my back so she could pull the staples out.  She did it really quick and I barely felt it.  Then she said, “Let me check your pouch real quick.”

There was something about that statement that didn’t sit very well with me.  What did she mean “check” my pouch.  My pouch is on the inside, so how is she going to check it?

“Please pull down your pants and roll over onto your side for me.”  (my fears were coming true.)  “Just a little jelly, it might feel cold.” (oh God, this is going to HURT!!!!!!)  She stuck half of her finger up my butt.  “Just squeeze like you are trying to hold some stinky in.” she told me.  I was more than squeezing, I was gasping for air, tensing my entire body up.  I think I started shaking and whimpering.  She kept saying, “Almost done, try to relax.”  Easy for you to say, I thought.  She kept spinning her finger around like she was looking for something.  I was wondering, “Did you guys loose something in there during the past surgery?”

She took her finger out and said, “I need to go get the Dr.”  (That didn’t sound good.  ‘Couldn’t find what you were looking for?’)  “You can just lay here and relax,” she said.

“Is he going to do the same thing?”  I asked.

“Yeah.”  she said back as she walked out of the room.

Like I can relax now!  I layed there on the table in the fetal position for about 10 minutes waiting for the Dr. to get there.   I heard his voice down the hall and I started to tense.

“How are you doing, Chaz?” he asked as they both walked back in.

“Not so great.”  I smirked.

Now I thought his assistant was rough on my butt, however my Dr. jammed his entire pointer finger into my butt.   Then he started twisting…. and pulling sideways… then I felt a little ‘pop’… and more pulling and twisting.  I thought his whole hand was in there.  I was hoping he didn’t loose his watch up there.  FINALLY he stopped.  He asked if I would rather use my own fingers?  WHAT???  “Not really!” I joked back.

“Why don’t we bring you back in Friday and we will put you to sleep so we can work on this a little more.” he said.

I just nodded yes.  I was in pain.  I layed there in the fetal position sucking my thumb and trying to find my happy place.

What I learned from that visit is this, sometimes after surgery, the area where they attach the J-pouch to the anus can have scar tissue around it.  This restricts the flow coming out.  To fix this they use dilation to dilate the anus and stretch it open.  Usually they can do it with their fingers, but if that doesn’t work they have tools, sadistic tools that can stretch me out.  Thank God I will be out for that one.

Hopefully it will only need to be done once.  Some need it done more.  And  since that visit we have learned that some have to do self dilation everyday.  Yes, you just read that correctly and it does mean what you think it means.  Right about now I am thinking to myself, “What did I get myself into?”  I do NOT want to perform self dilation on my butt every morning.  People used to say every day, “don’t forget to wind your watch.”  Now my family will have to say every day, “Dad, don’t forget to dilate your butt.”  Lori has done a lot of things for me through out this whole process…. this will not be one of them.

Now I have to go Friday morning so my Dr. can ‘rip’ me a new one, literaly.  I’ll keep you posted.

Graduation

My youngest son graduated from Kindergarten last night.  I can’t believe my youngest is going into first grade!!  I attended the event, but I did not do very well.  Quite frankly, I did horrible.  This was my second outing for the day, the first was to the doctors for a check up.  (I’ll post that tomorrow, it will be good reading for you)    I was already stressed from the doctor earlier that day and the graduation didn’t help.  I was just anxious the whole time I was there.  I hated it.  I will be glad to get past this junk.  I don’t miss it.  I had to stand in the back of the room the whole event and just shift back and forth from one leg to the other.  I am sure I looked miserable.

The feeling that I have is horrible.  I will try to explain to my healthy friends to see if you can relate and understand.  Have you ever had to go to the bathroom really, really bad.  I mean, for whatever reason, you have far exceeded your allotted time for holding in your poop.  Maybe it happens as you start to stand up, or maybe it happens as you are walking or just sitting there, but suddenly you feel that awful feeling of everything starting to come out.  Like a turtle poking his head out.  You know what I mean, the back door has been breached, the alarms are going off, the body is going into shut down mode.  OK, now freeze that moment.  The pain, the horror going through your mind as you begin to process what might begin to happen.  Think of the way your butt feels as it involuntarily tries to hold back the troops from forward progress.  That incredibly uncomfortable feeling that something is NOT right at the moment.

Well, that is how I feel when I leave the house.  I feel like something is coming out the bottom of my butt and I CAN’T relax for nothing.  The whole time I stood there last night I felt like I was crapping my pants in front of everyone.  I was sweating, clenching my fists, rocking back and forth.  I looked like a crack head coming off of his addiction.  It was so bad someone came over and offered to take me home.

So. I made it through the event, but had to bail immediately after.  I was able to give a quick hug and a kiss to my sons and Lori and then my in-laws jetted me out of there to return home.  I was exhausted.  I was glad that I stayed for the event, I hated that I missed ice-cream with the boys.  (Lori took them out after the graduation.  Another event where Dad is absent…)  But I did make it through the graduation, as horrible and as awful as I looked, I made it.

BUT, that was yesterday and today is a new day.  I can’t go back and change yesterday, but I can work on today.  I have to keep looking at the small positives that happen and not focus on the one large negative that happened.  I slept 3 hours last night without getting up, the most since the surgery.  Also, at home I feel almost 100%.   I don’t have any issues, except going to the bathroom 15 to 20 a day, but that will get better with time.

Here are two pics from the last night.  It was a Western theme and Dana, (my wife’s boss) is a pure genius.  She wrote the whole play and it was awesome.  She is so talented it’s not even funny.  It really was a great night, minus my overactive bottom.  Zayne is the second from the left.

Deja Vu

One of the toughest parts of this recovery has been the mental side.  I feel like I am back to ground zero.  I feel like I am right back where I started before the surgery.  It is like reliving a nightmare all over again and mentally it is very difficult to deal with.  My son said the other day in the living room, “It’s like the Crohns is starting all over again.”  I hated to hear that, but I agreed with him, I feel like I am starting all over again.

We all knew this was going to happen, so we shouldn’t be surprised, but it is still a downer all around.  Having the ileostomy bag was a blessing and a curse.  It was a blessing to feel free from the disease, and to have no worry where ever I went.  After I healed the first four weeks, we were able to do about anything we wanted.  We went to Tarpon Springs, the Hoop-Dee-Doo Review (a 2 hour dinner show),  a nice long walk along the beach, school functions, work, and the list goes on.  I got to live for 9 weeks without the disease and it was wonderful.  The curse is, when you have the take down surgery and re-hook up the plumbing, you start all over again with all of you bathroom issues.

This has made me very anxious and stressed.  Lori is amazed how fast I have resorted back to my old ways.  Because of this it has caused stress and tension between us.  She wants me to take a deep breath and just wait it out, I, on the other hand, am freaking out and having a melt down.  I tell Lori she is insensitive to what I am going through, she reminds me that she as been sensitive for 6 years and this is supposed to happen.  I tell her she doesn’t understand, she agrees.  I am worried and stressed because I don’t want to relive this whole disease again.  She tells me I won’t have to, it will pass.  But what if it doesn’t?  It will!  I can’t do this again!  Do WHAT again????  I start freaking out that I am starting all over again and the whole circle spins again.

I know it’s me.  Mentally I am having a hard time.  I find myself feeling and thinking like I did before the surgery.  For instance.  The other day I wanted to go to the boys school for a Doughnuts with Dad event.  If you read our blog you know that I didn’t go.  I got up, showered, went to the bathroom, ate breakfast, got dressed, (not in that order, I don’t eat breakfast in the nude.) and was ready to go.  But as the clock ticked toward our departure time, I got more and more anxious.  “What if I can’t make it in the car?  What if I have an accident at the school?  What if I have stomach pains at the school?” I started to stress and finally I gave in to the stress and told everyone that I couldn’t make it.  I can feel myself withdrawing again.  Fear is starting to run my life once again.

The other day we decided to go to Target and Game Stop for Colbe to look around and spend some of his birthday money.  This would be my first time out since I had been home.  It was Saturday, one week, from coming home from the hospital.  We went to Target, about a 10 min drive and I was nervous to say the least.  We went into the store and I was anxious the whole time in the store.  After about 30 minutes, I told them I had to go to the bathroom.  I went in and only passed gas.  I thought for sure I would pass the last 7 meals I had eaten I was hurting so bad.  Again, it seems to be more mental than anything.  Same was at Game Stop, I lasted about 10 minutes there before I ushered everyone out of the store to go home.  I was stressed and frustrated, and preoccupied with my butt.  I hated it because all I thought about was ‘me.’  I zoned out and ignored everything that my family was doing.  I felt like those early days of my disease where all I wanted to do was stay in the safety of my home.  The closer to home we got, the better I felt.

So, where does that leave me?  I don’t know?  Right now I feel hopeless at times about everything, but then I realize I am barely one week out, I still have a lot of healing that I need to go through.  I can’t rush this time, I have to be patient.  I don’t mind being patient, it would just be easier if I wasn’t reliving all my past disease again.  I fear that I won’t heal, what if I can’t leave the house?  What if I can’t go back to work, church, stores, anything?  And to make it all worse, it is all in my head.  I am allowing this to stress me out.  Like I said, the mental challenge is going to be far more difficult than the physical.

I will keep you posted of my mental stability over the next 3 weeks.  Hopefully it will get better.

It’s Only Been a Week?

It’s 3:00am and I can’t sleep again.  I don’t sleep much at night for some reason.  I guess it is from getting up to go to the bathroom all night.  This morning while I was in the shower, I was feeling frustrated about my progress and then I realized, it has only been a week since I came home.  I retraced the days in my head thinking I had made a mistake, but I hadn’t, it really has been a week.  It feels like 3 weeks to me.  It has been a LONG week.  I wanted to try and sum up some of the week in a review for those who have been following my progress.

I came home from the hospital last Saturday and I was feeling really good.  My system had just starting working and I was beginning to eat real food.  It was finally time to test the new ‘plumbing’ and see how it worked.  I ate pretty much what ever I wanted, I wasn’t too picky and soon the food began making its way through the system.  All was going along pretty well, until the butt burn began around day 2 of being home.  I started applying the creams that I had and tried to stay ahead of the burn, but I failed quickly at that.  By day 3 I was in incredible pain.  To make matters worse, my pouch was all acting wonky on me.  I felt like I had to go to the bathroom all the time.  It was horrible.  The only thing that seemed to help was walking.  So I started pacing our living room floor in a circle.  It takes me 26 steps to make the loop.  I do it in 15 sec laps.  I have walked that circle over 1000 times this past week.  I would put on a good movie and start walking.  I would also drink LOTS of water while doing these laps.  One day I drank 120 ounces of water to try and keep my body working right.  I think that’s a gallon of water?

That was pretty my routine.  Walk, drink, poop, cry, walk, drink, poop, cry…  For about 3 days.  I did finally get some relief from my butt burn.  It is a product called, Ilex.  It is a skin paste that really protects the skin.  It is very thick and gummy, but it did the job for me.  After about 8 hours of using the stuff my pain went from 100% to about 20%.  It has been a butt saver for me.  I also changed my diet.  I stopped eating whatever I wanted, and started eating more simple things, potato for lunch or a piece of cheese pizza for dinner.  Some white bread for a snack or a small bowl of cereal.  I kept the meals simple, didn’t mix and match a lot of things.  I wanted to see what was helping my system, and what might be hurting my system.  I learned that cinnamon is not a good thing for me.  It gives me gas.  Neither is raw chocolate chip cookie dough, go figure.  Potatoes are good and so is cheese pizza, Yeah.

As the week went on I did notice improvement, it was small, but there was improvement.  The corner that I was looking for was happening, it was a small corner, but none the less it was a corner.  I was having 3 or 4 hour stretches at a time of relief.  This was a good thing.  The physical pain was still pretty dominate, but I was having small pockets of relief.

That is about where I am tonight.  Still fighting through the pain most of the day.  But this is all physical side, I haven’t begun to tell you about the mental side to this week.  I think I am finding that the mental recovery from all of this is going to be worse than the physical…

The Little Things ARE Important

This morning the boys had an event at school, “Donuts With Dad”.  As you are aware Chaz had a HORRIBLE day yesterday, but he really wanted to attend this with the boys.  They attend a small school with 100% parent participation, so he knew it would mean a ton to the boys for him to be there.  He was going to ride in with me & the boys & then my parents would pick him up within 30 minutes.  We all got up this morning….Chaz moaning & hurting the entire time.  He got completely dressed struggling every step of the way.  Every time a boy would leave the room he would let out a deep breath & show how bad he was hurting.  Finally, about 5 minutes before we were to leave, he comes out & tells the boys, “Sorry guys.  Daddy just can’t make it this morning!”  Everyone of us was crushed!  The boys each told him they understood & that it was alright.  They were determined to not make their Dad feel worse.  We gave our hugs & left.  The entire trip to school I was fighting back the tears.  I have watched my own mother suffer with chronic illness since I was in the 7th grade & now I have to watch my husband suffer.  Chronic illness slowly takes those ‘little things’ in life away from you!!!  My boys are champions, but I knew they were hurting.  ALL of the other dads would be there, but theirs.

We arrived at school & went in to help finish setting up things.  My boss (friend…Dana) asked how things were & I said fine.  She looked at me & said, “Really how are things?”  I didn’t have to say much & she was pushing me & the boys out the door.  A few of the teachers made a plate of donuts & Dana shared with me the importance of going home to be with my husband.  I just LOVE my job!!!  We are always praying for & encouraging each other!

The boys were beside themselves!!  They packed up their presents, & donoughts & we were off.  As we pulled in the garage Chaz came out.  A HUGE smile lit his face!!!  He was so excited that we loved him so much to bring the ‘event’ to him.  The boys did not care where they ate donuts with their dad this morning as long as they got to be with HIM!!

Today Sucked

Today sucked, sucked, sucked.  I don’t even like saying that word, but today totally sucked.  My butt burn is killing me.  Every time I wipe I wince in pain.  It is like rubbing over a open wound over and over again.  But that is not the worst part.  All day I have felt like I had to go to the bathroom.  Like I was going to crap my pants.  I have fought it all day, trying to make my pouch get used to having something in it, but it has been a loooong, painful, tiring day.  I have not gotten any sleep today or rest, I have paced the floor of our house for about 8 hours now, moaning and groaning every step.  I think it may be gas that I am dealing with.  Many times when I go into the bathroom, nothing really comes out.  Just enough to ‘wet’ the infected area and make me wipe again in tears.

I know this should only be temporary.  There is a corner that I should turn soon, next week or the week after, but that seems like forever away today.  I can see why some people run back and have the permanent ileostomy put in and forget about the pouch.  I don’t want that, I want the pouch to work, but the thought of having a bag back and going on with my life sounds really nice right about now.

Hoping for the corner to come quickly.

Butt Burn = No Fun

It’s official, butt burn is no fun.  I haven’t done much in the past day except moan and groan over my burning tush.  It is way more than I thought it would be.  When I go it feels like hot, chunky, lava coming out.  Then I put this very thick cream on afterward to help ‘coat’ the skin from being infected.  It’s called ‘Calmoseptine’.  This is nice, but you feel like you have a big clump of toothpaste in your crack.  Not to mention the cream is a ‘minty’ feeling?  I don’t really know how to describe it, but if you are from up north you may be able to relate.  Have you ever brushed your teeth on a really cold day, and then went outside and took a deep breath and felt the minty cool air rush down your throat?  Well, that is how I feel, except it is on my butt.  Weird!

As far as going to the bathroom, that is a whole different experience.  I have to get used to my new pouch filling up and then emptying it.  I have not had this sensation for 9 weeks now, so it is a strange feeling.  My problem that I am having right now is I can’t empty my pouch all the way.  I always feel like there is something in there.  That means I constantly feel like I have to go to the bathroom, but if I go in there, nothing really comes out and the whole ‘burn my butt’ thing starts all over again.  So, I have to force myself to hold it until I think I really have to go.

On a positive note, I have been able to hold everything without any accidents.  That is a good feeling.  Some people have accidents after surgery, so I am hoping to not be one of those people.  I have been able to sleep on my side in my bed a little.  That has been really nice.  I miss my bed.  I also have been loosing some much needed weight since I can’t eat much at one sitting.  Anything to help my stomach not look so much like a tiny butt

I know this is all part of the recovery process, so I am taking it one small step at a time.  Hopefully this step will pass and I can move on to some more ‘normal’ feeling.

Guess Who’s Home?

So, I get up to the hospital this morning around 9:00am.  Chaz had already told me on the phone that he had ‘passed gas’ last night.  We were excited because this told us that things were connected & moving in the right direction.  Strange….hugh?  Anyway, one Dr. had already been in & told him he could start on soft foods….so that’s good news yet again!  Around 11:00am another Dr. with the team came in & asked if he wanted to go home…….YES!!!!  So, we left the hospital around 1:00pm, went and picked up the boys, and are now HOME!!!!  Only 2 1/2 days in the hospital!!!!!  God is Good!!!!

Chaz is doing well with recovery from surgery, but the Butt Burn has begun.  He is in a LOT of pain right now.  He says it feels like shards of broken glass coming out of his bottom.  He has a cream that he puts on, but he says that doesn’t do much to help.  This should be a fun week

Stinky’s old stomping ground!!!!

This is Chaz & I with his ‘hospital wife’!  She was there both stays in the hospital & made our time there so much better!  Thanks Sharon!!!

Shakes with Grams!!!!