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. 

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!