Gym what is that?

Sadly this is the truth. I know most of this is motivation and my choice, but that is also a very hard thing to change. 

I am going to throw myself out there and share with everyone but I am at one of my highest weight. I am currently 6'4" and weigh 236lbs. Now if that was muscle weight I would be a decent size football player however it is not muscle. 

I have a secret desire to be in much better shape than I am currently in.  When I see other guys that are in great shape it does make me jealous I am not going to lie. I think I struggle with my weight gain partly because I never struggled with it, however I know that was because of being sick. After I went on prednisone I gained 70lbs and have struggled since that time. I struggle now with having my ostomy. I do not want to overdue it and cause a hernia by doing something wrong. 

Part of why I don't like going to the gym is I don't like going by myself. It sounds stupid when I say it but it's the truth. I wish I had someone to go with me and to help motivate me and keep me going.   I hate feeling like others are looking at me or that I am doing an exercise wrong. 

I do want to be in a better physical shape, but the biggest part is I want to be healthier and more comfortable with myself. I have ran the Bolder Boulder twice, completed the fight for air stair climb, and used to be active playing rugby. Now I get winded chasing the kids, I know part of that is from developing asthma but it drives me nuts. I want/need to make a healthy change. I am hoping I can get motivated and will try to post updates. I hope that by sharing I can build up some motivation and make some changes. I appreciate any support you may have and are willing to share.

My goal is to be down to around 200-210 and feel more comfortable with myself. I want to have more energy and just be healthier. I hope I can write a "I did it" post later this year!  

I Can Never Participate in the Greatest Joke Ever Again!!!

This has to be one of the worst realizations I have had since I became an Ostomate in January 2013.  Due to having a stoma that produces gas and does it whenever it wants.  You know like while you are sitting in a a group of professionals and it is dead silent and Gustav the stoma lets one rip.  I have no control over this any more which means I can never be the father or grandfather that does the "Pull My Finger" joke.  Please allow me a moment of silence while I morn over this.  Thank you!

Mom, Mother, Moeder, Mutter, Madre, and Maman!

"My mother had a great deal of trouble with me, but I think she enjoyed it."

Mark Twain

No matter how you say it she is my mom and I am thankful for her.  She has been my best friend and a rock for my whole life and now I get the pleasure of seeing her as a grandmother and being able to share her love with my children. I always get a little smile on my face every time Jude asks if we can go to see his Arizona Grrmama.  I am glad that my children love her as much as I do!

My mother had a lot to put up with as I was growing up, I know this comes as a surprise but I was a little bit of a headache growing up and we went through many, many, many growing pains together.  The best part of it is that no matter how much I may have tried to push them away or no matter how bad I screwed up my mom was always right there standing by my side loving me and supporting me.  

My mother has been there for me when I would wake up in the middle of then night crying because my legs hurt so bad from growing pains and she also was the one walking around with me outside in the middle of the night because I had croup so bad that we had to try to get out in to the cold air.  My mother dealt with me coming home in jeans that were so big you could have smuggled a family in them and also my multiple, multiple hair colors, piercings and tattoos.  Still no matter what my mother always came to me and told me "I Love You!"

We have had yelling matches in high school about how mean she was and how I was never going to live up to her expectations but here I sit today thankful that she never gave up and had such high expectations for me because I am the man I am today because of my mom.  She is one of the first people I call when things are going tough and she is always there with an open ear and allows me to vent and also will try to make me laugh. I remember when I had my Ostomy surgery in January my mom sat next to my bed and rubbed my arm while I was running a fever and was in pain so I could go to sleep, see even at 31 I needed my mom.   I would not be half the man I am today without my mother.  You can call me a mamma's boy all you want I will always be thankful and attached to my mom.  

Its funny I was listening to a song by Slim Cessna's Auto Club the other day "Children of the Lord" it takes a part from the Sunday School Song.  It has a part in it that goes "Rise and shine and give God the Glory, Glory" and I had to laugh some while singing this because I couldn't do anything but think of my mom singing this to me while I yelled at her to go away while I was trying to sleep!  Thank you mom! I love you more than I could ever tell you!  

How Am I Supposed to Go Swimming?

When I was told that I was going to be getting a permanent Ileostomy I had many questions.  One of those questions was how am I going to go swimming?

I mean really think about it I have a "Bag" attached to my stomach with just adhesive and lets not even go into what it is full of:)  I was so nervous about how am I going to go swimming again.  This was a big thing for me I love swimming and my parents live in Arizona so we go swimming every time we are down there.  Lets be honest who wants to be in Arizona in July and not be in a pool, not this guy!

When I was first told about my Ileostomy I began doing some research on different types of wraps and things that people use to have what they call a "normal" life.  I do wear a wrap every day to keep my Ileostomy closer to my stomach so it doesn't show as much and also makes it easier to wear dress pants but think of this wrap as a tube top that I wear on my stomach.  It more or less holds it there but doesn't do much else from there.  

This is when I stumbled upon an AWESOME company called Stealth Belt (www.stealthbelt.com).  This belt is amazing.  It holds my Ileostomy in a little pouch that is held very tightly against me by Velcro straps.  So it doesn't just cover my Ileostomy it actually holds it while I am doing active things.  Also it is made from the same material as swim suits so I can wear it to go swimming.  How awesome is that.  The other thing that I love about this wrap is that it is much smaller than my day in and day out wrap so when I do have my shirt off for swimming it is not as big of a deal.  

They do make the Stealth Belt in a variety of different styles and also patterns so one can wear it no matter the occasion.  The other thing that I love about my stealth belt, especially as I am now hoping to get back to working out, is that because of its design it also is a hernia support.  This is a huge deal when you have an ostomy.  The Stealth Belt can be found at www.stealthbelt.com and it is easy to measure yourself for it and get it ordered right away.

 

Here is a picture me wearing the Stealth Belt prior to going swimming with Teagan for her swim lessons.  This is an amazing belt and it has made me feel comfortable enough to go swimming again.  I cannot wait to put it to good use this summer when we go to Glenwood Springs with my family and Jude and I go down the water slide together.  

Please pass this information on to anyone you know that has an ostomy or my be facing a future with one.  The more we know the more comfortable we are.  I know this was something that scared me at first when thinking about having a permanent Ileostomy.  

Disclosure:  I was provided with a FREE Stealth Belt in exchange for a product review. However, all the opinions expressed here are my own.

The Things That They Can Do with Surgery Amaze Me!

So I am going in for another surgery on December 12^th, 2013 at 7:30am to have a reconstructive surgery done.  I have been going to the doctor almost daily since January 9^th due to having a wound post-surgery that would not heal.  We have tried EVERYTHING to have this wound healed but my body is saying Nope I don’t think so! 

My body has been acting this way for a while now so it is not a surprise that it would go ahead and decide to do it now but we gave it a lot of time.  This week I hit my 300^th doctor visit this year.  That is a lot I know the nurses on a first name basis and I bet if you ask them they have seen way more of me than anybody ever wants to see.  

When they do a proctocolectomy they remove the rectal stump because you do not need it any more they give you as we in the ostomy call it an action figure butt or a Barbie butt.  You know the kind that is there but completely closed up and serves no function?  Well that was supposed to happen to me, you have no idea how happy I was to have a GI Joe butt, come on my wife would love a GI Joe butt right?

Well my body decided not to heal the wound so instead of GI Joe butt I went back to a complete dysfunctional butt that would not heal.  I have a six inch by 1.5 inch cavity that will not heal or close up. So that means going in daily to have the wound packed with gauze to try and keep it from closing up too quick and causing an abscess to form.  So not only do I have to go in daily what they do to me is not pleasant by any means.  Luckily I have had some very amazing nurses and doctors who have been trying to provide the best care for me possible.

So with this surgery I will be a human jigsaw puzzle as I like to call it but I am so thankful that they are doing it so that I can hopefully be healed and moving forward.  They are going to use the two small muscles on the inside of my inner thigh the Gracilis Muscle to pull through the wound and fill the cavity and then allow my body to just heal the outside wounds.

Here is a wonderful write up about it on Wikipedia:)

 

The gracilis muscle is commonly used as a flap in microsurgery. According to the classification of Mathes and Nahai, it presents a type II blood supply, allowing it to be transferred on its artery derived from the medial circumflex femoral artery. This artery enters the muscle about 10 cm from the pubic symphysis. At this point (or 1 cm proximal) the nerve also enters.

Gracilis muscle is widely used in reconstructive surgery, either as a pedicled flap or as a free microsurgical flap. Both pedicled and free flaps can be muscular or musculocutaneos (the so- called "composite flaps"). As a pedicled flap, gracilis muscle can be used in perineal and vaginal reconstruction, after oncological surgery, in the treatment of recurrent anovaginal and rectovaginal fistulas as well in the coverage of the neurovascular bundle after vascular surgery.^[3]

As a functioning pedicled flap, the gracilis muscle can be transferred for the treatment of anal incontinence. This technique called graciloplasty was described in the 1950s by Pickrell and was revolutionized in the late 1980s by the introduction of chronic muscle electro-stimulation. The gracilis microsurgical free flap is commonly used in the reconstruction of upper and lower limbs, in breast reconstruction and – as a free functioning flap – to restore forearm function or in dynamic reconstruction of facial paralysis.Gracilis Muscles Clinical Role

So I only have 20 more daily visits to get through and then we will have surgery so please keep my family in your prayers as we go through one more but hopefully this will be the last one!

Trying to Get Back in a Routine!

How is it April already?

 This month was supposed to be my first month back to work after my surgery!  I had all these grandiose plans of getting back into a routine and just moving forward, we all know how well that has been working! 

 

I went back to work for two weeks and then ended up in the hospital for another week which mentally set me back and we had to keep moving forward at this point.  I went in for another surgery for them to clean the wound and then was discharged thankfully and able to return home.

 

So I decided to start again this week and we were going to get back to a routine.  Luckily I survived this week despite some saddening news at this point in my recovery.  So I have been meeting with my regular surgeon every week and he told me that at this point he is seeing limited healing in the wound, the wound looks good but it is not healing as well as it should be.  Last week he talked to me about meeting with a plastic surgeon.  He said that they were talking about removing muscle from my leg and then filling the wound with that muscle.  This is how it has been described to me thus far.  I am meeting with the plastic surgeon Thursday of this week.  My doctor told me that I would be looking at another 3-4 day hospital say.  As Censie says we all know how my body responds so we will plan a week.  I have mixed emotions about this on one hand it would heal the wound then the other hand it is another surgery and another hospital stay.  You know what is another hospital stay when you have spent 26 days in the hospital over the past four months!!!

 

Luckily this week I got to be home and was able to go to Jude's first soccer practice.  He had a great time and did so well for one of the youngest kids out there.  Now he is not the smallest kid out there but is one of the youngest.  It was nice to be able to get out and play with him, however running for the first time with my ileostomy was a little weird and is going to take some getting used to. 

 

 

Then on Saturday after my daily visit to the nurse, yes those are still going on I have no idea when it is going to ever end!  We went and did Easter Egg Scramble.  Jude had fun even though we only came home with one Twizzler and one empty egg.  He did really good being patient.  This is one of my favorite pictures!

 

 

Then on Sunday we went to church and then hunted for more Easter Eggs.  We had a great time playing and eating candy throughout the day, whoops daddy has a sweet tooth.  Then later in the evening he crashed, I got to cuddle with my little boy, not something that happens very often any more.  It was nice being able to have a day where I didn't have to worry about my ileostomy or having to go the doctor.

 

I am really hoping that I will be able to have more days like this but I will know more on Thursday.  I will make sure to keep everyone up to date on what is going on and if I am going to have to have another surgery.  Thank you all!



World Meet Gustav, Gustav Meet the World!

Drum roll please..............................

 

 

Ladies and Gentleman..........................

 

 

I am pleased to introduce to you my Ileostomy and Stoma that I have named Gustav!

 

As many of you know I had to go in for a proctocolectemy in January and at this point I have a permanent Ileostomy. 

 

This is something that I am still coming to terms with but I have named it and Gustav just seemed to fit.  A long time ago I had a kid introduce me to his Gerbil who's name was Gustav Thomas.  So when I thought of a name Gustav just came to the front of my mind. 

 

I think that the hard part for me has been the healing, sad to hear huh?  I am still healing and we are almost two months past surgery, and to be honest I was not really prepared for all the healing that I am dealing with but we are almost there.

 

Since having my Ileostomy I have joined many groups on facebook and it seems as though one big step for people is to post a picture of them with their bag.  I get it, we are no longer hiding and we want people to know that this is who we are, and in my case will be for the rest of my life. 

 

My Ileostomy has saved my life and has given my life back to me as well.  I am trying to make sure that I never become ashamed of it.  I will do everything I can from here on out to wear my bag with pride and honor because the scars show the fight that I gave for so long before having this surgery.  So without further ado I present to you Gustav!

 

 



Proctocolectomy What's That?

PROCTOCOLECTOMY?!?!?!

 

So I know that I have been gone for a while but I am still trying to heal and get going on my feet again.  So I thought that I would try and get this post going through.  Many people have asked what exactly I had done.  I had a total proctocolectomy, that probably doesn't mean much to you but here is the description from www.webmd.com

 

 

In proctocolectomy, the large intestine and rectum are removed, leaving the lower end of the small intestine (the ileum). The doctor sews the anus closed and makes a small opening called a stoma in the skin of the lower abdomen. The surgical procedure to create the stoma (or any other artificial opening) is called an ostomy.

 

The ileum is connected to the stoma, creating an opening to the outside of the body. The surgery that creates the opening to the intestine is called an ileostomy.

Stool empties into a small plastic pouch called an ostomy bag that is applied to the skin around the stoma. You have to empty the bag several times a day.

So as you can tell they attacked me from both my stomach and also my bottom in a polite way to say it.  It has been a major change for my family and I and I am still trying to recover, yes even over a month post surgery I am still having to heal.  I will talk more about my hospital stay and all the excitement that came with that in another post.  I hope to get back into posting on a more regular basis.  Thanks for reading!

2013 Where to Go From Here?

Goals for 2013?!?!?

 

I have never been one to do New Year's Resolutions because I have never fully completed them so I am hoping that I can just complete these goals for this year.  I have had a lot of time these last couple of days sitting here to think about them :)

 

1. My goal is to be healthier this year.  I have had a lot of health issues over the past several years but with surgery happening on January 9th I am hoping to be able to move forward.  I put on 70lbs since being on prednisone and with this surgery I will be able to get off this drug.  I am also hoping that I will be able to work out more and be more active without having to worry about my illness. 

 

2. I am hoping to be a more present and active father and husband.  This also goes along with number one but when I am sick I am not able to do the things with my family that I want because of fear of being sick.  I want to be outside playing with my children and family as much as possible and make sure that they have a good time spending time with me.  I want my children and wife to know every day that I love them and how lucky I am to have them in my life.

 

3. I want to be more of an advocate for Ulcerative Colitis and now having an Ostomy.  I have told my close friends and family about this illness and how it affects me but I would like to be able to help others who are going through this illness.  It can have a huge impact on the individual but also the family, just ask Censie, I know she is done with this illness as well.  I think that we often times do not talk about this illness because of what we have to talk about but we have to spread the awareness of it so that is more accepted and understood.

 

4.  I want to read more.  I have a Kindle and have started reading again while in the hospital and I really want to keep reading more.  I want my children to share in the love of reading, Jude already loves books but this was something that I didn't do enough as a child.  I want them to see that it is important and enjoy a good book!

 

5.  I want to gain control of my anxiety and depression.  This has been something that has been a challenge for me.  I am seeing a therapist about it but I need to be able to gain person control of it.  I continue to worry about everything and beat myself up about things.  Also when this happens I shut down, right Censie?  I need to be better about understanding it and managing it so that I control it and it does not control me. 

 

6. I want to try and do more things that I want to do.  I want to start playing my guitar more, it takes practice but I never play it but really want to be able to play the guitar more.  I also want to start cooking more. This is something that I enjoy and I do have a interest in I just never do it or never try anything.  I want to try and commit to doing these things more often

Well this is my start to what I want go accomplish in 2013 and I hope to continue to add more and cross some things off as well.  Most importantly I want this year to be about my family and enjoying spending time with each other every day and knowing that we love each other fully each and every day as well.  Good luck to everyone else in 2013.