Absent!

Yes I am back again and I know that I have been absent for quite some time again.  I really want to keep up with this blog and make sure that it is useful as well I just keep letting life get ahead of me.  This last year has been very rough for my healing and health.  I had my proctocolectomy in January 2013 and have had multiple surgeries since that point.  We had a muscle flap surgery done in December 2013 to hopefully heal the wound but it has not closed completely yet.

I am at about 14 months at this point with an open wound from my Proctocolectomy.  It is hard for me mentally and I continue to struggle daily with this.  Not only for the last month have I been dealing with the open wound but I also have been dealing with packing the wound daily by myself.  Now I could go in and have it done again daily like last year but we know how hard that was financially so we thought we would try it this way.  I am thankful that we are not paying for a visit every day but it is hard mentally for me.

I really would like for this blog to be something that individuals enjoy reading and that I can support other fathers, and other individuals with IBD.  Now I am also part of the Ostomate community so that adds another area where I want this blog to go to.  I will be working on committing more to making sure that blog posts getup and are meaningful. Do you have any suggestions on what you would like me to write about?  I appreciate every one's support and you will be seeing more of me.  

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!

So I AM Going to Get Better At This!

So everyone can tell me YOU SUCK!

I apologize that I have been gone for so long in regards to typing up my blog but I am back on track now hopefully and will promise to get better at this. 

I am making this my own personal goal to get back into this and post as much as I possibly can.  I will be working on a new post here shortly!  Thank you everyone for supporting me and any encouragement would be accepted!  I am not going to have this be something else that I do not complete!

Jeremy

Another Secret Subject Swap!

Welcome to Take Two of August’s Secret Subject Swaps. This week, 13 brave bloggers picked a secret subject for someone else and were assigned a secret subject to interpret in their own style. Today we are all simultaneously divulging our topics and submitting our posts. 

 

Here are links to all the sites now featuring Secret Subject Swap posts.  Sit back, grab a cup, and check them all out. See you there:

 

 

http://BakingInATornado.com                            Baking In A Tornado

http://dawnsdisaster.blogspot.com                    Dawn’s Disaster

http://www.theblacksheepmom.blogspot.com      Black Sheep Mom

http://indianamericanmom.com                         Indian American Mom

http://www.homeonderanged.com                      Home on Deranged

http://coachdaddyblog.wordpress.com                  Coach Daddy

http://www.justalittlenutty.com/                           Just A Little Nutty (Guest Post)            http://www.itsyummi.com                                   It’s Yummilicious

http://dates2diapers2.blogspot.com                       Dates 2 Diapers

http://www.rocksnosaltmommy.com/                     Rocks, No Salt Mommy

http://crazyasnormal.com                                     Crazy As Normal

http://ibddaddyandme.blogspot.com/                    IBD, Daddy and Me!

www.thatsuburbanmomma.com                           That Suburban Momma

 

                   

My subject is "The first time I met my significant other, I thought... " It was submitted by http://dawnsdisaster.blogspot.com.  Here goes: 

 

It's probably a more of a fun story to hear about what Censie's parents thought of me when they first saw me, but that is not the question.  I met my wife Censie at College in Seward, Nebraska.  It is funny we grew up about 30 minutes away from each other but in Colorado it was about a world apart and it took us going to Seward, Nebraska to meet. 

 

We were both in the DCE (Director of Christian Education) program at Concordia University which is a private Lutheran college.  We had gone on a retreat to a camp to do a service project.  It was fun because I instantly thought that she was HOT and really was attracted to her.  Then I found out that she was from Colorado so I got to use that to get to know her.  She was a grade younger than me so I had a car and a way to get home to Colorado so I got to use that to hit on her. 

 

It was funny because I had to wear a sleeveless shirt at the time you know I had to show off my tattoos.  She started talking to me about them and it came up that she had a tattoo and wow that was it for me I was hooked I have a thing for tattooed women.   It just added to her hotness.  Then from there the flirting started which I suck at, just ask her.  She had to explain to me how to spell her name because it is spelled differently Censie.  She had to write it on my shirt in paint and from that point on I had a huge crush on her.

When I met her though I was dating someone else but I always had a huge crush on her and also I was in a bad point in my life.  I had been going through a lot of issues but I was able to have her as a great friend at first and then I was lucky enough to call her my girlfriend, then my wife.  She has been a rock to me and I am so lucky to have her. 

This past year has been so hard on us, I am writing this post from the hospital and thinking back this is actually the second secret subject swap that I am posting from the hospital.  She has stood by me as I have dealt with my Ulcerative Colitis, my ileostomy surgery, anxiety, depression and everything in-between.  It is funny that this journey that has now taken us throughout ten years started at a service project retreat where we were painting a house.

Sometimes you never know why people are put in front of you but I am glad that we were put together on that day.  She has been an amazing wife and best friend and I am thankful for her everyday.  So yes it was love at first sight but it just took me a while to be able to act on that love!  Thank you for this subject and I hope that everyone enjoyed hearing our story.

Now when Censie's dad saw me I was running in front of him with blue hair, smoking, and loud music blaring and he turned to his brother in law and told him that he didn't think that I was going to make it very long there at school.  And now that person is his son in law so again don't judge a book by it's cover.  Thank you for reading!

But you don't look sick!

But you look healthy? 

 

This was something that I heard a lot of while I was sick with Ulcerative Colitis and while I have been dealing with my ostomy.  Invisible illnesses and disabilities can be some of the most difficult things to deal with.  If people can see that you look sick or that you need assistance from something they are more willing to understand and help out. 

I do not like showing off my ostomy bag so I do everything I can to conceal it when I go out.  Also it makes it easier for me if I have my bag secured to my stomach and do not have it just hanging, just think a bag of poop does get heavy after a while so I hold it up with a stomach wrap.  As you saw in my previous post just ask Jude about my bag and he will be more than happy to show it off to you.

The things that people do not understand are that when I was in a flair with ulcerative colitis I was going to the bathroom 20-40 times on a bad day.  Just so we can put that in perspective if I am up from 6am-10pm that is 16 hours.  So if you are going 20 times that is 1.25 times per hour and if it is really bad it's 2.5 times per hour.  I used to get so jealous of people saying that they only pooped once a day or even that they went every other day.  I was praying for several hours off from the bathroom.  Those were also the times that I made it to the bathroom, there were several times that I was running to the bathroom and didn't make it.  So much fun let me tell you when you are at work that you have to sneak out of the bathroom to your car to leave because you had an accident. 

So I went forward to have the surgery.  Now I am just waiting for the wound to heal.  I have been going to the doctor almost every day to have a wound cared for since January 9^th, and I have to pay a copay every time.  Now throw on top of this that I have a bag that I poop into and have to change every three days and I have to empty my bag usually about every four hours.  There is always the possibility that it might leak or pop off like it has when I stand up and get it caught on something.  I have to be careful lifting things so that I do not herniate my stoma.  Also because of my open wound I have to wear diapers ever day due to the wound trying to heal.  So with all of that going on I am to remain positive all the time despite the anxiety and depression that have come along with it and have been exasperated by the prednisone that I was on. 

Yes I am getting healthy and let me be the first to tell you I am very thankful for this but there are days that I wish I had been healthy enough not to have to have an ostomy.  So next time you see someone and just assume that because they look healthy and are not needing your assistance right away that they are ok and do not need a helping hand every now and then.  We all need some support every now and then.  I like to tell Jude all the time that even Superman and Spiderman need help from their friends every now and then. 

Daddy why do you have a bag?

Dad you have a bag?  This is a question that I hear pretty frequently now a day from my son Jude!  He knows that I have an ileostomy and that I now wear a bag on my stomach.  He always asks why do you have a bag?  I have to explain to him that daddy was sick in his tummy but that this has made daddy feel better.  He then goes into to explain to me that I have poop in my bag.  I am glad he at least knows what is going on with itJ

 

These are the things that you have to deal with sometimes when you are an ostomate and a parent.  It has been a pretty large life change for the past 6 months.  I went in to the hospital on January 9^th for my surgery and I have been living with my "bag" ever since, and will be living with it for the rest of my life. 

 

Physically I have been feeling better up until recently.  My wound had healed to the point that I didn't have to go to the doctor daily anymore on May 16^th, but then in the first week of June I had problems with it. They just thought that it was something minor but I went in on the 12^th of July and the wound has reopened.  We are not sure why but I have to go in daily again to have a nurse pack the wound with dressing.  Let me tell you it is a BLAST!  Not only did this take a hit on my physically but I would say more so emotionally and mentally.  It is hard dealing with this wound that does not appear to be healing.  Overall though physically I am much better.  I am able to go out and do things with everyone without having to worry about being sick.  I do have to worry about bags coming off or leaking oh and the fun alien noises it makes but so far those have been far less common then when I was really sick and in a flair.  It is nice being able to plan to use the bathroom besides having to run to the bathroom while squeezing your butt cheeks together praying to all that is holy that you make it in time!

 

I am able to wrestle around with Jude but he knows that he has to be careful of my tummy because I have a bag.  It is an experience trying to potty train a little boy and living with an ostomy because things are done so much differently than how he does things.  He is just very curious about it but is not shy about telling people about my bag or wanting to see my bag in public, yeah that’s a fun one!

 

Mentally I feel that it has been harder than anything else.  If you have spent much time with me you know that I can be a little obsessive compulsive but I am constantly checking my back to make sure it is not leaking.  It can get annoying for others and for myself.  I also have not been dealing well with the self-esteem pieces. This will come and I know it and I am working with a counselor for it but it is a hard thing to deal with having a "shit bag" attached to your stomach every day.  There are days that I am angry at having to have it but I am trying to remain positive and remember that I am healthier with a bag than I was without one.  Overall the past six months have been an up and down roller coaster at times but I am glad that I can smile with Jude when he walks up and wants to see my bag or says why do you have a bag?  I want a bag too daddy! And I can smile at him and say I hope he doesn't but knowing that love makes it worth it!

A Honest Confession!

I have a confession to make........

 

I don't always finish what I start!  I know that this may come as a shock to you but its the truth:( 

 

 

This is a thing that I feel that I have dealt with for quite some time.  It came up in counseling and so I took a look at my life and realize that there might be some truth to this.  I also have unrealistic definitions of success and failure.

 

I have a nasty habit of when I do something that I expect to be the best at it right away and if I am not then I am a failure.  It sounds odd when I type it out but its the truth. 

 

I own two guitars and I have a love of music and always wanted to learn how to play.  I can play some but when I couldn't play every song that I wanted I got disappointed and have stopped playing them.  I also did this when I wanted to learn how to play the harmonica. 

 

This blog has been one o those as well.  When I started it I thought that this was going to be something that people are going to go crazy over and when it wasn't an overnight success I put it on the back burner.  I apologize to everyone that has supported me with this for doing that. 

 

I promise that I am working on what my definitions of success an failure are.  I know that it is going to take some work and some recommitment but I need to continue to work at this.  For those of you that know me please help hold me responsible for finishing and following through with things.  I am working to better the person I am and this is just the start!  Thanks!

Jeremy