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.  

A Quick Look Into My Brain! (Buckle up!)

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.”
― Henry Wadsworth Longfellow

The definition of Depression is as follows:

1. Severe despondency and dejection, accompanied by feelings of hopelessness and inadequacy.

2. A condition of mental disturbance, typically with lack of energy and difficulty in maintaining concentration or interest in life.

I however would describe it as a nasty snake that can creep in and wrap itself around you and it will easily consume you before you even know it is there.  This snake as I like to call it has had a major impact on my life for quite some time, now whether or not I want to admit it is a whole different story.

              Growing up mental health was not something that was talked about or even I feel accepted in my family.  If you were felt different you didn’t talk about it you didn’t go see someone you just dealt with it.  Now this may have been only my perceived impression of how it was handled, but then again this is my blog and that is how I felt!

              I think that there are many people who have a negative view of depression and that they feel that all I do is sit around my house in a robe eating and crying.  I can let you know that is not the case.  I get up I go to work everyday and I come home and spend time playing with my family but mentally I do struggle with this.  It is a challenge that I fight every day that no one sees, I wish I could let people see it because then I think that it would be understood more but sadly I can’t put a projector on my brain and let you see what is going on in there.

              It's funny in many ways how many people will say things negatively about depression without knowing that they are talking to someone who is dealing with the same illness they are talking poorly about.  It took me a while and a lot of encouragement from my wonderful wife Censie but I started seeing a therapist and it has helped.  Now it's not like walking in having an epiphany and then I am all done but it is an ongoing battle of ups and downs where there are days that I feel great and then days that I feel like total shit.  I think that having my surgery has been hard for me mentally even though I feel healthy I am still adjusting to having a bag on my stomach for the rest of my life.  So this is something that I will continually look in the face and know that it is a part of me but it is not something that will consume me for the rest of my life.  I need to be present for my children and for my family!

“Man is not worried by real problems so much as by his imagined anxieties about real problems”
― Epictetus

The definition of Anxiety is as follows:

1   A feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.

2.  Desire to do something, typically accompanied by unease.

              Now I compared depression to a snake that wraps itself around you where now I will compare Anxiety a little pesky worm inside your brain hopped up on speed making sure that you worry about everything.  In my case I worry about pretty much everything at all times.  So lets recap I have a snake holding me down and a worm making sure that I worry about every small detail about everything.

              If you have known me for any part of my life you could probably easily see me as being a pretty anxious person.  I get really bad social anxiety at this point as well.  Some of my anxiety stems from IBD.  I would always worry about what if eat something that makes me sick, where is the bathroom, are people counting how many times I go to the bathroom, and do people think I am making myself sick?  Now I worry about is my bag going to pop off, do people think that I smell, what are people thinking about me? 

              I also have a strong desire to make everyone like me and I cannot handle thinking that people are mad at me.  My coworkers know this now about me and it has become a joke that someone is just going to come up and say they are mad at me because they know I will not be able to let it go.  I worry about how people look at me and if they are judging me or if I did something to make them upset.  I worry about what people think about how me, how I look how I act.  It's like running a sprint all the time in my brain and it can be exhausting at times. 

              Luckily Censie has stood by me through all of these challenges because my Depression and my Anxiety were exasperated these last three years in dealing with my Ulcerative Colitis. 

              I am writing this post not to get people to feel sorry for me but to make mental health more normal and show an insight into my world.  I constantly hear bad things about people with mental health or that we must be weak if we go to counseling.  I would say the opposite.  I think that it takes a ton of strength to go to someone and admit that you need help and that you need support.  I want to make sure that neither of my children ever feels bad about being down on themselves or being nervous but if it becomes a huge issue in your life then you need to go and seek out support. 

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