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. 

The Hospital Must Have Missed Me!

I'M Back In The Hospital!

 

 

As many of you know I have been dealing with the recover from my surgery for the past two months,  This has required me to have a nurse come to my house, and since I have been at work I have had to go into Kaiser every single day to have a wound packed and changed.  There have been ongoing issues.  Most of these issues have been from the nurses not knowing how to pack a wound and doing it incorrectly.

 

My nurse on Saturday packed it wrong and put too much packing in the wound.  With there being too much packing in the wound, the bacteria did not get a chance to come out it just sat there in the wound and they think the bacteria grew into the wound.  So Monday I started to feel very sick and had a fever, chills, and aches.  My doctor then wanted me to come in and we did a CT Scan and blood tests.  After all of those tests he still could not figure out what was going wrong with me exactly so I got admitted to the hospital. 

 

 

When they admitted me they hooked me up to IV antibiotics throughout the day.  Sadly this did not seem to work.  They were pumping the antibiotics but my fever still stuck around and even got worse.  It got all the way up to 102.6 this was not good and I was getting irritated, scared and nervous. 

 

 

Today, Wednesday Morning, my surgeon took me down to surgery and cut the wound open more and then cleaned it out.  Basically he power washed my wound.  He thinks that he was able to find out where the infection was coming from so that is good.  Since I have been back in my room I have feel like my fever was gone but we will just have to wait and see.  I have been here at the hospital since Monday night and looks like I am not going home till Thursday at the earliest.  I think that we are ready to be somewhat normal and not have to deal with all these illnesses.  This one has taken its emotional toll on me and I have had a few breakdowns.  Luckily I have had many people to lean on.  I appreciate every one's support and I will work on keeping up with my blog more and making sure that you all have the most updated information.  Thank you again for everything. 

 



Seriously?!?!?!?!?!

DAMN YOU ULCERATIVE COLITIS!!!!

 

So I made it out of the hospital through Christmas!  I was able to be there in the morning and see Jude's face as he opened his presents and then the awe and wonder of Santa and his fish tank.  I am thankful for that moment.  Sadly though I didn't make it long past that.

 

We were able to go get more fish for his fish tank last night, you know Santa told me he could go get more fish, and we got them all set up and they are doing well.  However 20 days after being discharged from the hospital I am back here again.  I had been struggling off and on since being discharged but was looking forward to having my surgery consult on the 2nd.  I started bleeding again and having a lot of urgency, which led to me having two accidents.  Yes that is where we are at, I have no control of my body which sucks ass literally! 

 

They told me that they felt that it was the best idea for me to come in to the Emergency Room so I did and now am admitted to the hospital again.  We are talking in the morning about the surgery and what we are going to do.  The scary things for me is I am afraid to be discharged again because I don't know how long I am going to make it through.  I just don't know but hopefully we can come up with a plan because I cannot live like this.  Thank you for your thoughts and prayers!  I will keep everyone updated!

You Know You're a Parent When.......

You know you're a parent when...

you voluntarily will put your hands out to catch another person's vomit!  I never thought that this would be something that I would ever do, nor did I ever have the desire to do. 

Last night after we had a fun time at Zoo Lights we went to go eat and Jude got sick while we were eating. He has done this before but he was able to start feeling better, or so he told us, and we made the mistake of allowing him to eat more.  Now Censie had been sick all Saturday with a stomach bug but we did not think that Jude was sick.  He ate some food and we left.

On our way home he started complaining that his stomach hurt.  I found a place to pull over but then he said that he was feeling better. We got going again trying to make it home as soon as possible, you know trying to prevent the puking in the car fiasco.  We made it about five more minutes and he said that his stomach hurt again. I pulled over and got a paper bag and tried to get him to aim in the bag.  FYI a paper bag and vomit do not work well seeing how vomit is mostly water!! 

Jude ended up getting sick and without any other options I cupped my hands and tried to catch as much of the vomit in my hands to prevent it from getting on him.  It was a pretty useless attempt but I do have to say it was an attempt to help out.  This again is something that I never thought I would do but as a parent sometimes you just have to open your hands and let your child vomit!  I guess I got my initiation into dealing with a sick toddler as well!  

Does Anyone Have a Map?

There are many times in life that I wish that it came with a Map on which to go.  This time is no different than others and I wish that I had a map more now than ever.  These last six weeks have been crazy busy and a lot has gone on, you can read about those in my other Update Post.  I am still in the hospital, this is only day three but if you have ever been in the hospital it feels like forever.  I hate when I don't look sick and start to feel better just have to stay in my room because I need to have Prednisone administered through IV so that I can feel better.

 

I have been in the hospital for a Ulcerative Colitis Flair.  I was having 18 bowel movements a day with quite a bit of bleeding.  I was trying to stay healthy so that I could take care of Censie after she had her surgery, but my body decided that it didn't want to allow that.  This has been something that has been a concern for my family the entire time that I have been dealing with this illness.  I finally got the call from my doctor that I needed to come into the hospital. 

 

After I came in they did another colonoscopy, this is number 11 in three years.  That is a lot but it could be worse but it is not something that I look forward to doing.  I had a flexible sigmoidoscopy in September, this is a colonoscopy but not as invasive, and it showed that I was healing.  During this check up it showed that I have moderate to severe Ulcerative Colitis throughout 2/3rds of my colon.  This shows that the medicine that I was on was not working and that it was not keeping my body out of a flair, which it should be.

 

So why do I want a map?  Censie, my family and I are going to be faced with a huge decision that is going to affect our family for the rest of our lives.  We have the possibility of trying one more medication.  This medication also comes with the possibility for a lot of negative side effects and my doctor has described it as a "Hail Mary" attempt at stopping my Ulcerative Colitis.  The other option which would cure my Ulcerative Colitis would be surgery.

There are two different options for surgery to take care of Ulcerative Colitis.  The first one would be a total colectomy which would remove my entire Colon and then they would give me a stoma with an ileostomy bag for the rest of my life.  If we go with this option it is not reversible.  This would be difficult as I would have to get use to having a bag for the rest of my life but would also cure all and I could move forward.

The second option would be to have them construct a J-Pouch which would be an internal pouch but would require two surgeries.  They have stated that I am younger and that I don't want to have an ostomy bag for the rest of my life but it is something to consider.  If I do the J-Pouch there is the possibility of developing Pouchitis and having to have that treated. There is also the possibility that it will fail and then they would have to do the ileostomy anyways.  Also if they do the J-Pouch you still have to go to the restroom 4-8 times per day, I know that is an improvement but still it would be difficult to have to deal with. 

I was going to post images but I figured that would be going to far.  So as you can see there are a lot of things that we have to think about and then hopefully make the right choice.  Please continue to keep my family in your thoughts and prayers as we make these decisions and I hope that the Map we decide to follow leads us to a great place!

UPDATE!
So I wrote this while I was in the hospital and was waiting trying to figure out what direction I was going to go with my health.  I met with my doctor and she felt that the medicine that we had discussed was not going to be an option for me.  She has recommended the surgery  She has stated that the J-Pouch Surgery was not an option for myself.  My body is just to severely infected, especially my rectum, yes I said rectum :)  I also have had issues even when my colon is doing well so at this point I will be meeting with a surgeon to have a total colectomy and having a permanent Ileostomy with a bag for the rest of my life.  I am nervous about this and know that this is just the beginning of this journey but I will keep everyone updated and share my thoughts as we travel on this road together.  Thank

My Rock!

My Rock!

They always say behind a great man is a great woman! I would say in my case there is no better statement.  My poor wife Censie has been put through the gamut over the past three years and yet she is always standing there smiling.  I cannot thank her enough for all of her continued support and love.

We knew when I got this diagnosis of Ulcerative Colitis that we were going to have a long road ahead of us but I don't think we knew how bumpy this road was going to be and how long it actually was.  We started this journey back in 2009 when I got my diagnosis.  She was there by my side while I did my first colonoscopy prep, she went and bought me a movie to watch, sadly we didn't know that I wasn't going to watch any of it.  She came with me and sat there by my side as we heard the diagnosis.

Censie has been with me to multiple doctor appointments and been there with me as I am told over and over again that we are trying a new medication and the possible side effects that it may have on me.  I have been on Prednisone for 2 1/2 years and gained 70lbs while on this medication.  It also increased my anxiety.  Now if you have ever met me in person you know that I am a anxious person in general but my Anxiety has just gotten worse.  It took a long time for me to admit how my anxiety and depression affected my family but Censie has always been there for me.  We have had our ups and downs and I am still learning about how it affects me but it is a work in progress. I have a history of shutting down when I get anxious and also always fear for the worst, which doesn't help my gut issues.

Censie has always supported me in the directions that I want to go and has never left me hanging by myself.  She has provided me with two beautiful children, thankfully they have their mom's good looks and hopefully they have their mom's colon as well and not mine.  She provides me with love and support and help in any endeavor that we face.  I have never been concerned about what is ahead of us because I know that I have her by my side. 

This month has a been a prime example of everything.  Three days before Teagan was born my "Papa" passed away, this was a huge hit on my emotions.  Teagan was then born and then the next week my parents were out here for a funeral, she did not complain she welcomed it with open arms.  Then she got sick and ended up having to have her gallbladder removed.  The days leading up to this she had my parents and grandmother out here for thanksgiving and then put on an awesome baptism for Teagan.  I then started feeling sick, as much as I tried to keep my body from doing it I just kept getting sicker and sicker.  I kept worrying about leaving her at home but she kept encouraging me to take care of myself.  She never was upset about me coming to the hosptial she just wants me to get better and does not want me worrying about what is going on.  She has always been there with a smile on her face encouraging me to get better. 

We know that we possibly have the decision about surgery coming up and she has stood beside me through everything and keeps me positive as I get down about myself.  I know that she will support me through everything and we will get past these hurdles that we have had. I know without her I would have already stumbled and failed but I am where I am at because of her!  I cannot thank her enough for her awesome support I hope that this is just a beginning in me continuing to tell her how much she means to me and how much I love her!  Thank you Censie!

A Whirlwind of Emotions

WHY????

10/17/2012.  This has been a post that I have been trying to write since that date.  Sadly this is the day that that my Grandfather, or my "Papa" as he will always be in my heart passed away.  

Thankfully I was able to be present with him at his house with family and friends when he passed away.  This is something that was very hard for me but also something special for me to be there with him.  I know that he is no longer in pain and that he is at peace but as we know it is hard for the individuals left behind.

I went through my memories that day and I am continuously going through memories as we get closer to the funeral and with my family coming out.  I am very lucky to have been able to have my Papa with me for 31 years.  I remember going with him and my father to Baseball Card shows and he would always talk to me about the cards and help me pick out cards.   He always let us play with his little slot machine while we were at his house, I am lucky that he gave this to our family and it is now sitting in my house.  I remember when he would call the house when we had a baby sitter and they were freaked out because a robot was talking to him but that was just papa talking with his "talk box" that I called it due to having a stoma.  

I am very thankful that Jude got to meet him but am also saddened that he passed three days prior to Teagan being born.  I know that he is watching our family from heaven and I hope that he is proud.  

This is one of the pictures that I got of Jude playing with Papa.  This was after Papa had been sick but was still able to enjoy playing with Jude.  This picture will always hold a special place in my heart. I feel the tears coming up as I am writing this.  I got to see the smiles on both of their faces and see Jude get "buzzed" with the "talk box" he used to talk and remembered how it felt as a child to get buzzed by Papa.  

Papa will always remain in my heart and I will share stories about him with joy and happiness.  Every time I see poker chips, slot machines, sports cards and sadly the Raiders, I will think about my papa.  I am blessed to have had him in my life and I am glad to know that he is spending time with his dad up in Heaven and hope that he has found peace and joy.  I love you Papa!

I Have a "Boo Boo" in my Tummy

I have a "Boo Boo" in My Tummy!

Today is one of the days that it is so fun living with Ulcerative Colitis.  I had been having issues with my gut, it could be a little bit of stress, who would have thought that but I had to call my GI doctor.  I am trying to make sure that my body doesn't go into a full flair, that is not something that I need to put on my family right now or my own mental health.  This morning Jude kept asking me to eat breakfast with him but I had to tell him that I couldn't, something that is impossible to explain fully to a two year old.  The best way to explain it was that I had a "boo boo" in my tummy and that I had to go see a doctor.  He continues to lift up my shirt and check my "boo boo."

Three months after Jude was born I ended up spending seven days in the hospital due to an Ulcerative Colitis flair.  Luckily my doctor knows me super well so when I call her and tell her that I am having problems she gets me in right away.  I called her yesterday and she told me to come in for a Flexible Sigmoidoscopy.  Yeah if you haven't had one or a colonoscopy they are as much fun as they sound.  

Here I am sitting in the waiting room waiting to go in.  I had not eaten anything since 9pm on Monday so I was hungry by this point, and some lady was eating in the waiting room but oh well what can you do.  So they then took me back and got my IV all hooked up.  While they were talking to me they were asking when my last procedure done was.  I couldn't remember so we pulled up the history.  I had a colonoscopy in February and one in September of 2011.  It was kind of saddening knowing that I had three procedures done within a year.  I couldn't help but think of when my father called me asking me for advice on what to do during a colonoscopy prep, something that I shouldn't have to tell me dad about.  The Dr. completed the flexible sigmoidoscopy and we did get good news.  My colon is still showing mild signs of Colitis but definitely saw signs of healing.  I did get a talking to about my enemas, I am having to get over the mental block of having to do one every night but it is the best for me and my family so I have to get through it.  

Here I am recovering after the procedure.  It is always tiring even though I don't have to do much.  I am so thankful for my doctor for always providing me with support and help when it is needed.  She is aware of my family and she always helps us get through this illness as a unit.  I am thankful that we got the good news that we did so that I do not have to consider the surgical options that there are.  I know that this is a possibility eventually but my mind and my body are not there at this point.  I am thankful for my wife for taking me and always being there by my side and supporting me.  I am also thankful for my son who is always there with a smile and a hug!  We will beat this illness together!